Hospital leads the way in the West Midlands, extending leave for staff whose babies are born premature

This week The Smallest Things has welcomed the news that a second NHS Trust has pledged to sign our Employer with Heart charter, extending paid leave for staff whose babies are born premature.

Leading the way in the West Midlands, Sandwell and West Birmingham Hospitals chief nurse, Paula Gardner, said “We are pleased to become the first Trust in the West Midlands to offer this commitment to parents. Our staff are dedicated to their jobs and work hard to ensure their patients receive high quality care, so we believe that we should return that sentiment by looking after them when they need our help in their personal lives. By signing up to this charter, it means that we will be able to help new mums and dads who are facing a difficult and worrying time after experiencing premature labour.”

One in eight babies are born prematurely and for mothers their maternity leave begins the very next day, weeks and often months before brining their baby home from hospital. The Smallest Things are working with other NHS Trusts and hope that more hospitals will continue to follow the lead of Medway NHS Foundation Trust and Sandwell and West Birmingham Hospitals.

Welcoming the news Catriona Ogilvy, founder and chair of The Smallest Things charity, said “We are delighted that Sandwell and West Birmingham NHS Trust has recognised the unique needs of families of premature babies and is signing up to our Employer with Heart charter.”

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“Giving birth prematurely and spending time on a neonatal unit for weeks, sometimes months, is terrifying and traumatic for parents. The last thing they should be worrying about is work and whether they can afford to spend time at the incubator or cot of their fragile baby. We know that the journey often doesn’t end when a premature baby is allowed to go home either. This extra time will go some way to supporting parents’ mental health, the baby’s medical needs and ultimately aid a smoother transition back to work when the time comes.”

More information about The Smallest Things Employer with Heart charter and how to implement this at your place of work can be found here.

While you’re here – more than 229,000 people have signed our petition calling upon the Government to extend paid parental leave for all families whose babies are born premature. Will you sign and add your name? SIGN NOW!

Company policy changed in just 7 days – more time for parents of premature babies

Lena made a change to support parents of premature babies in just 7 days after her friend experienced premature birth. She said “having to return to work only 18 weeks after giving birth, when her baby had only been home with them for two months. That’s what my friend had to do. And I don’t think that’s ok for anyone to have to do at any company.”

Signing up to The Smallest Things Employer with Heart charter GrantTree have pledged to extend paid parental leave for staff whose babies are born prior to 37 weeks gestation.

Welcoming the news Founder and Chair of The Smallest Things Charity Catriona Ogilvy said “Lena was able to change her companies policy in just 7 days and in doing so she has made an enormous difference to lives of staff affected by premature birth. We are delighted that GrantTree have recognised the significant impact premature birth has upon parents and the additional time will support their staff through and after the trauma of neonatal intensive care.”

Lena told The Smallest Things “As a company we don’t want to sacrifice our happiness for commercial success and supporting premature parents at a time of need seemed a necessary and compassionate step to take. Implementing the policy change took only seven days and has been welcomed by everyone. Seeing the company embrace the policy has made me immensely proud to work at GrantTree.”

GrantTree follow in the footsteps of music giant Sony, Medway NHS Foundation Trust and local authorities up and down the country.

Find out more about The Smallest Things Employer with Heart charter or contact Catriona directly at smallestthings@yahoo.com to follow in the footsteps of companies like GrantTree.

! While you’re here, more than 229,00 people have signed our change.org petition calling upon government to extend parental leave for families affected by premature birth. Will you sign and add your name?

Premature Birth – Our Journey Through Neonatal Care

My journey through premature birth and neonatal care began back in January 2016.

I was just 24 weeks pregnant when my waters ruptured.

Calling ahead to the maternity day care unit they told me to go straight in. They confirmed that my waters had ruptured and I was taken to the labour ward, unsure if I would progress into labour or not. I spoke to the team from neonatal care and was told that if my baby did come early wasn’t a space for him in the unit, I therefore needed to be transferred to another hospital with spaces for us both. While this was being arranged I started to bleed. It was a relief as it meant I had to stay put, I wasn’t stable enough now to move. The thought of being away from my husband & other son was just too much. But what about my baby? They reassured me that they would do everything they could to find my baby a space.

We met the NICU team and visited the NICU unit. I remember it being so calm, both quiet and noisy at the same time. The beeps – I’ll never forget the beeps.

We were told about the slim chances of our baby surviving at 24 weeks. We were asked if we wanted to ‘let nature take its course’ or if we wanted them to do all they can. That is one question I never want to hear again. There is some naivety about being in hospital. I don’t think it really crosses your mind, that ‘what if?’

I stayed I hospital for about 5 days on bed rest. My baby didn’t arrive so I was allowed home.

For the next 2 weeks I made the trip to maternity unit to get checked over every other day. I had a couple more admissions as well with small bleeds.

On Valentine’s Day 2016 I had a huge bleed. We called my midwife who told us to phone an ambulance. We arrived at the hospital at about 6pm. I was examined, monitored and scanned. They were confident that I wasn’t in labour.

It was around 8pm, shift changeover, that I was put back on the monitor. I was uncomfortable and in a bit more pain. We didn’t see our new midwife much as they were quite busy, and after all I wasn’t in labour… when all of a sudden I felt this immense pressure in my bottom along with a really strong contraction. My husband suggested that we call the midwife, but I said I was fine. Then a couple of minutes later it happened again. My husband shouted for help and the midwife came running. She had a look and could see the baby. The room filled with medical staff, it was hectic, urgent. They whisked my baby off to a room across the corridor, the room emptied.

The waiting was awful. A couple of doctors came and went asking various questions, taking blood samples. One even asked if baby had a name – Jacob.

We were told we would be able to go at around 3am to see him. By this time we were in a private room on the maternity ward. I’d showered, got dressed, phoned my parents and called my sister to check on my other son. Done as much as possible to busy my mind. 3am came. The staff on maternity called NICU to make sure they were ready for us to go round.

The walk to NICU was one of the longest walks of my life. It was the dead of night. There were no other people around. We were buzzed in and I remember we just waited at the reception desk unsure of what to do or where to go. We eventually made our way round to the sink to wash our hands and then made our way to the Intensive Care Room. There was a lot of hustle around our baby. But he was stable. He had been ventilated, he was on a drip, countless medications.

At 27 week, seeing Jacob for the first time at 6 hours old

The one thing I hadn’t been prepared for when I saw his incubator was the condensation. You literally couldn’t see the baby there was so much. We opened the doors to take a closer a look. He was tiny. 2lb 3oz. His skin was red and transparent. He was bruised from his traumatic birth. I broke down. My body had done this to my little baby.

What followed was a long 11 and a half weeks in hospital. He suffered a collapsed lung, numerous suspected infections, not gaining enough weight, reflux, retinopathy of prematurity (ROP), oxygen dependency…but we got there.

First cuddle at 2 weeks old

It was so hard to start with, but once we got into a routine it became more manageable. My husband and I did separate ‘shifts’ at the hospital so we could both spend time with each of our sons. My husband still had to work, my maternity leave pay wouldn’t even cover the mortgage!

Jacob came home 10 days before his due date on oxygen. We were given the choice of staying another couple of weeks to try and wean him off the oxygen, or taking him home. We chose home. I don’t think we could have spent any more time on the unit. We needed to be a family.

Home at last

Jacob is now 2 and a half and doing well. He managed to wean off of the oxygen in December 2017. He is a feisty little bean, full of life. Unless you know him and his rough start, you’d have no idea about what pain his little body has endured.

Saying goodbye to the oxygen at 26 months

And me? Fast forward a little while to November 2017 and I had another premature baby. This time I managed to hold on to him a bit longer – 33 weeks exactly.

I’d had a pretty rubbish pregnancy with lots of bleeds. I’d re-met the NICU team at 24 weeks as I’d been admitted with bleeding. I was terrified the same would happen again.

We were told the likelihood of my waters rupturing early again were slim, so once we’d passed 28 weeks, where we’d got to last time, we were optimistic. Maybe it was just a one off last time?

Or maybe not.

I woke to my waters leaking. It was the middle of the night, my other 2 sons were fast asleep. I woke my husband, called my mum to come and sit with the children and made our way to hospital, I hadn’t even packed a bag! We were quite relaxed about it all, after all we’d done it all before.

We arrived on the labour ward a couple of hours later. I was examined and put on a monitor. We just thought that I’d be home in a couple of days as I wasn’t in labour, again.

How wrong we were.

The baby’s heart rate dropped and took a long time to recover. The room filled and I was being prepped for theatre. I’d had a placental abruption. It was happening again.

In recovery I was shown a couple of pictures of baby. He came out screaming. He was in NICU, but was breathing on his own. He weighed 3lb 12oz.

It was about 6 hours before I was wheeled round to see him. On the way all the staff in NICU congratulated me, told me how beautiful he was and how well he was doing. It almost felt like I’d come home. From our last baby we knew most of the staff. We knew the unit, everything was familiar.

They got my baby straight out of his incubator for me to cuddle. I couldn’t believe I’d got my first cuddles already. He really was ok!! We called him Oliver.

Holding Oliver for the first time

Due to his gestation he didn’t need the scans and tests that our last baby had had. At 33 weeks he just needed time to grow and put on some fat. But during our time in NICU Oliver had trouble maintaining his temperature so he spent longer in an incubator.

Baby Oliver spent longer in his incubator

Obviously home was on our mind. I never asked when they thought he might get to come home – I already knew the answer – aim for his due date. But his due date wasn’t until January. How was I supposed to give Christmas to my other boys and have a baby in hospital? As far as I could see there was no medical issues. We needed to establish feeding and get him to gain some weight. The nurses were fantastic and knew we wanted to be home for Christmas. They pushed Oliver with his breastfeeding and arranged for me to room in sooner rather than later and we made it home, all together for Christmas.

Oliver is 9 months old

Oliver is now 9 months old and doing well with no obvious complications from prematurity.

Jacob and Oliver

Both of my babies journeys in neonatal intensive care were so different. For me the second time around was the hardest. Having that knowledge of what goes on, what to look for, what to do, what can happen – it didn’t help, for me it was worse.

The work that the doctors and nurses do is absolutely incredible. There aren’t enough words to show your thanks and appreciation for all they do, not only for the babies in their care, but also for the families of those babies. I will never forgot our journey through neonatal care.

Written by Hayley Petts

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Can you help to raise awareness of neonatal care? It’s easy, just tap the buttons now and share on Twitter and Facebook!

If you have a story to share, please contact Catriona at smallestthings@yahoo.com

Finally, if you agree that time spent in neonatal intensive care shouldn’t be used as maternity please sign out petition – https://www.change.org/p/extend-maternity-leave-for-mothers-of-premature-babies

Medway NHS Trust becomes first hospital to extend leave for staff who have a premature baby

Medway NHS Foundation Trust has become the first in England to sign up to The Smallest Things ‘Employer with Heart’ Charter, pledging its commitment to support the needs of premature babies and their families.

Current NHS terms and conditions afford new mums whose baby has been born prematurely to split their maternity leave, allowing them to take two weeks leave immediately after childbirth, and the rest following their baby’s discharge from hospital.

One in eight babies are born prematurely and subsequently parents have a reduced time to bond with their baby with the period from birth, to discharge for babies born prematurely typically being several weeks, or even months.  The Trust has therefore taken the step to support new mums in this intervening period by committing to ensure they receive their normal pay up until the point that their normal maternity pay commences.

James Devine, Deputy Chief Executive and Executive Director of Human Resources and Organisational Development said: “We are proud to have become the first NHS Trust in the country to sign up to the Employer with Heart Charter.

“Our staff work tirelessly every day to look after our patients and we want to ensure that they also receive the support that they need when they have difficulty in their own personal lives.  We know that this will affect only a small number of our staff each year, but it is so important that we care for those who are caring for others.

“We understand that it can be an extremely difficult and worrying time for those who experience premature labour and the last thing we want is for our hardworking staff to feel they have to worry about work or whether they can afford to take time off to be with their baby”

Catriona Ogilvy, founder of The Smallest Things, said: “We are delighted that Medway NHS Foundation Trust has signed up to our Employer with Heart charter and will give parents of babies born prematurely the extra time they need. Visiting a fragile baby on a neonatal unit for weeks, sometimes months, is terrifying and shouldn’t be counted as maternity or paternity leave. This extra time will give parents more chance to bond with their babies, take care of them at home for longer and recover from the trauma themselves.”

Find out more about the charter, information for employers and employees here – The Smallest Things Employer with Heart Charter

More than 219,000 people have signed the change.org petition calling upon Government to ensure that all families have the extra time they need following premature birth

For all enquires please contact e. smallestthings@yahoo.com

Paloma Faith and Sony Music UK support employees who give birth prematurely

NEWS!!!

Sony Music UK becomes the first media company to sign up to The Smallest Things “Employers with Heart” Charter, giving paid extended leave to both mothers and fathers of babies born too soon, as well as providing psychological support on return to work.

Welcoming the news, Smallest Things Founder Catriona Ogilvy said, “We are delighted that Sony Music UK has signed up to our Employer with Heart charter and will give parents of babies born prematurely the extra time they need. Visiting a fragile baby on a neonatal unit for weeks, sometimes months, is terrifying and shouldn’t be counted as maternity or paternity leave.” She went on to say, “bringing your baby home can be difficult too, as often there are ongoing medical issues and concerns about development and immunity. This extra time will give parents more chance to bond with their babies, take care of them at home for longer and recover from the trauma themselves.” 

Speaking today Paloma Faith praised the steps taken by her record label to support parents during these difficult times, stating “in that moment everything else takes a back seat and it’s wonderful that Sony Music are acknowledging that by introducing this.”

Jason Iley, Chairman and CEO, Sony Music UK & Ireland added “we always strive to be understanding and compassionate towards our employees. We appreciate that it can be an extremely difficult and worrying time for those who experience premature labour and family is of the upmost importance.”

So far, more than 200,000 people have signed a change.org petitioncalling upon government to extend leave for parents of premature babies. After meeting with The Smallest Things last year, business minister Margot James MP took up the issue announcing in the Governments Mothers Day Pledge that “mothers of premature babies should receive full backing from employers” and bringing forward new ACAS guidelines went on to say I am confident businesses will welcome these new guidelines and act on our advice, but I will of course keep progress under review, and do not rule out legislating in the future if our advice is not heeded”. 

The commitment made today by Sony Music UK will make a real difference in the lives of families who experience the trauma of premature birth and will give tiny babies the time they need to grow, develop and to bond with their parents after weeks and often months in hospital.

For all enquires or more information about the Not Mat Leave Campaign or Employers with Heart Charter, please contact Catriona Ogilvy at smallestthings@yahoo.com

The Rainbow after the Storm

We had suffered the unimaginable. I will never ever know how we survived Blake, but what I did know was I was in an extremely dark place alongside Graham, my husband, and my mum. I was very concerned about both of them, every minute of every hour. It kept me going in a strange way, I kind of put myself to one side. I suppose this was self preservation at it’s very best.
How does anyone know how they would react to such a horrendous life even? It’s unbearable to even think about it. We live this every single day and will do for the rest of our lives. To this very day, I haven’t fully accepted that our beautiful Blake lost his life and I now know that I never will.
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Blake, born at 30 weeks, in Neonatal Care

Blake suffered from an enlarged heart which took his life aged just 5 months old.
I couldn’t even begin to process what had happened for such a long time. I didn’t return to work for 10 months and couldn’t do so until we had the inquest and learned what had happened to our boy. How does a parent begin to cope with watching their 5 month old baby die in a bay in A&E surrounded by staff trying to keep him alive, battling so hard to save his life, only to watch them fall apart from when he became unresponsive. When I say fall apart, what I mean is they were immensely professional but naturally devastated. I entered a world that I never knew existed, a big black bubble of hell. It’s an indescribable place. I wanted to lie down and die, but I also knew that I didn’t want my son to ever feel responsible for something so harrowing. That may not make any sense to you, but it makes perfect sense to me. The human mind is a complex thing and my mind had convinced me that I had been in an accident, that I was in a coma and all of this was a dream.
I knew in my heart that I wanted to try again for a sibling for Blake, but I couldn’t bare experiencing any more heart break. As we awaited the inquest and I started to make tentative steps in contacting the IVF clinic. We faced a decision of remaining childless on earth or taking the huge risk of trying for another baby. I was determined to get us there, it’s not natural to have empty arms after becoming parents, it’s beyond life changingly painful, so our journey for Flynn started.
Our first IVF cycle was a success, but unfortunately I suffered a
chemical pregnancy and the pregnancy did not continue. Naturally we were devastated and I had to wait a couple of months to try again and a further 2 months of daily injections of fertility drugs. Round two was successful and resulted in a healthy pregnancy!
After a very anxious pregnancy Flynn was born at 32 weeks gestation weighing a tiny but
healthy 3lb 90z.
Flynn NICU

Flynn, born at 32 weeks

History repeated itself in more ways than one. The prematurity, the delivery, the fear for our new born son and the fear of his medical checks. We knew Flynn would be
admitted to NICU, but this time we knew what to expect and we were familiar with the staff and
the journey, which was a huge comfort.
Our NICU journey
The staff on the unit were delighted to see us. They had been aware of what of Blake’s death and they were delighted to see that we had found the strength to have another child. After all, they loved Blake all his life and now they were looking after his sibling, Flynn.

Being born prematurely, Flynn had to endure the same as Blake on NICU. He suffered with jaundice and received phototherapy, he was unable to regulate his temperature so his little home was an incubator and he was cuddled up to IV’s and lines and fed through a through a tube.

Flynn SCBU

Incubators, wires and feeding tubes – starting life in Neonatal Care

Flynn was doing well, but needed time to grow. We didn’t ever get used to having to go home without him every evening. It didn’t feel right, but we knew he was receiving the best care possible and we couldn’t have wished for a better team to care for our precious miracle.
We came to learn early on that there were no obvious medical problems for Flynn. A huge relief beyond words, but it was very hard to process and believe. We’d lost our first son to a heart condition and I couldn’t understand how our second child could be so healthy, it felt too good to be true. We were discharged home from NICU after 4 weeks. Like Blake, Flynn was tiny on discharge, but we felt much more confident with a tiny baby at home the second time round.
Discharge from NICU
On the outside we looked like we were coping so well after what we had been through, but on the inside I was paralysed with fear on a daily basis. Once home we received support from the Neonatal Family Care Specialist Nurse. She knew us well and it was very easy to discuss our fears with her. Things that are normal in babies, just those little things like facial expressions and the fast heart rate etc. had me in a constant state of panic. I knew it was normal but our lives were the polar opposite of ‘normal’ and I just couldn’t relax.
3 months after being home, I was home alone with Flynn and he was sleeping. I looked over at him and he looked extremely pale and his breathing had changed. I panicked, tried to reason with myself but couldn’t. I picked him up, he was floppy. His heart rate was much faster than normal and I just knew something was not right. Graham arrived home from work very quickly and took us to straight to Kings Mill ED.
Immediately on arrival to Kings Mill a nurse came from behind the reception and said
“your baby looks very poorly”. She took us straight through. Nothing could have prepared us for the fact that Flynn was placed in the same bay where Blake died.
Flynn’s heart rate was low and dropped whilst we were there. Once again I was paralysed with fear. Graham was trying his utmost to keep me calm but I just couldn’t see that the outcome of this would be a good one. The doctor came to see Flynn and we were admitted to the Children’s Ward for assessment. My fears should have lessened as we were out of A&E but still I just couldn’t see that we were going to get Flynn home.
He was monitored over a few days, and those few days were horrendous for me. I was absolutely convinced that it was his heart and that he was suffering the same as Blake. Lots and lots of reassurance was given but I just couldn’t accept that it wasn’t his heart.
It turned out that Flynn was suffering with silent reflux and had had an apnoea episode. Following this diagnosis the silent reflux became very evident. Of course there was much relief that it wasn’t heart related but I still couldn’t be convinced or could allow myself to be reassured. Blake had suffered mini heart attacks leading up to his death and all I could think was it was the same.
Flynn continued for the first year of his life to suffer with silent reflux and it was very distressing. Initially there were days that he would scream in pain for 9 hours a day and it took some time to stabilise his suffering, trying different feed options and medications, but we got there in the end.
Flynn and ickle pickle
Flynn is now medication free and those days of seeing him in so much pain are a distant memory but I will never ever forget how very hard those days were. Flynn’s Paediatric Consultant is amazing on so many levels. Having a good Paediatrician behind us has been paramount to our mental health. He is aware of the issues surrounding Blake and has offered so much parental reassurance as and when required. I could never express to him just how much he has made our journey with Flynn much smoother, lighter and less of a worry. We will always be very grateful to him.
Flynn and mum
It’s still hard for me to accept that Flynn is medically well. I still struggle to understand that my first born child died of an enlarged heart and that Flynn has no heart problems. I know he’s a different child but I live on tenterhooks most of the time. I try to keep it hidden as much as possible, but every time we face a simple childhood illness it flares up again.
Flynn toddler

Flynn is a very healthy 30 month old and brings rays of sunshine into our lives. He is a ball of energy and infectiously adorable. He really is an absolute treasure, a miracle. There will always be Blake missing from our lives, every second of every day, but we have learned to carry this the very best we can. We didn’t just lose a child, we lost a baby, a toddler, a teenager and an adult, everything he was going to be. The most heart breaking feeling is that he also lost us and his whole life he fought so hard for.

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Blake home from hospital, precious memories with his mum

Flynn and dad

Flynn, building happy memories with dad

With special thanks to Haley for bravely telling the stories of brothers Blake and Flynn and for sharing with us her heartbreak, joy and ongoing and long lasting worries.
Please help us to SHARE the brothers stories but clicking on the Twitter and Facebook buttons now.
If you have a story of premature birth and neonatal care you’d like to share, please contact Catriona at smalletthings@yahoo.com

A beautiful beginning, my heartbreaking story after premature birth

Graham and I were in Warwick for the weekend when I went into labour with Blake. At 30 weeks gestation I put the labour pains down to all sorts of other possible reasons as I didn’t once consider I was in labour. Graham had started to time my pains and quite soon on they were 10 minutes apart. We contacted the maternity unit and was told to go home and take paracetamol, but something was telling me to go straight to the hospital. I was frightened that something was wrong. We started our journey to Kings Mill Hospital in Nottinghamshire, we didn’t want to be out of area if we were to admitted to hospital. Contractions were becoming more frequent and so was the panic and concern for our unborn child.
Once at the maternity unit, I was put on the CTG monitor and tested for infections. An hour into being on the maternity ward my waters broke and our beautiful, tiny baby boy Blake was born two hours later.

The neonatal team were on standby whilst Blake was delivered and they took over in a way that calmed me. I could immediately see that Blake was in the hands of experts. I will always remember the doctor that took Blake and placed him in the incubator, he was so calm and collected in the chaos of the situation.

We were in total and utter shock, I had never known anyone to have a premature baby and I just didn’t know what to expect. My first feelings were ‘how can our baby survive being born at 30 weeks and what will he have to go through? All of this was very new to us and we just couldn’t comprehend what we were about to face.

Blake was cared for in neonatal intensive care for 6 weeks in total.
We were terrified, in shock and delighted that our son was safe and that we could see him…. but could also foresee he had a long road ahead of him.


I had been in theatre after giving birth to Blake and had an epidural which meant that I couldn’t see him for the first 6 hours. I could only see my new born son in the pictures that Graham had taken on his phone. I couldn’t wait to meet Blake and the staff who I would spend every day with for the next 6 weeks. On entering the ward to meet Blake for the 2nd time I was going through an array of emotions and one of the nurses said to me “congratulations”. It took me back a bit as it was like the focus was on the negatives at this point and just by her saying that to me put a huge smile on my face.

Blake appeared to look quite a size on the pictures for a 2lb 7oz baby, but nothing could prepare me for how tiny and vulnerable he was.

Feelings of guilt soon set in. I felt let down by my own body, I wondered if it was age related (36), I thought of all possibilities, I just couldn’t understand why this had happened.

I had to inform my employer and colleagues that my maternity leave had started approximately 8 weeks early. They were still working on sorting a secondment to cover my maternity leave and my department was already under immense pressure with a heavy work load. Although otherwise engaged I was concerned for them. They were amazing and very supportive, and of course they were concerned about Blake and what progress he would make. It’s easy to detect what is at the back of people’s minds ‘will he survive being born so early?’. It’s a question I asked myself constantly. I of course didn’t know the answer to this, nor was I qualified to fully understand what he may face medically.

It was soon revealed that Blake had a ventricular septal defect (VSD), a hole in the heart. It is a common heart defect that’s present at birth (congenital). After further tests the Cardiologist was happy that Blake wouldn’t need any intervention until nursery age.

The medical staff were simply amazing, nothing was too much trouble for them. Always more than willing to explain things to us and answer any questions and concerns we raised. Blake’s Consultant sat with us at length to explain Blake’s heart condition.

The Consultants without doubt are extremely busy, yet we never felt rushed by them. I always describe the nursing and medical staff as “angels without wings”. They are special and I admire them and what they do very much. They are on the edge of life and death every day and they also have worried parents to look after.

As we watched Blake experience bradycardia’s, tube feeding, jaundice, living in an incubator unable to regulate his own body temperature, surrounded by machines and wires the one thing that always struck me was the amazing staff and how they are just like a family. At such a distressing time the staff made our journey much more bearable.

Parents can be very hands on in NICU. You do cares, tube feeds, bathing and as much cuddling as the staff will allow. I was always terrified as Blake was so tiny, but you receive constant support.

We stayed with Blake in NICU approximately 16 hours a day and only went home to sleep. The hardest part for us was always going home. Of course parents are encouraged to go home and rest, but it’s so hard to do. I was expressing milk at 3am, ready to take in with me the next day. It felt so unfair, it was so unnatural to be away from your precious baby.

Graham returned to work after 2 weeks and it was such a difficult time. Graham is a diamond, an amazing dad and extremely supportive. His absence was felt and I just couldn’t wait to see him back on the unit at the end of his working day. His big beaming smile when he arrived on NICU was always very heart-warming. I don’t know how I would have survived this without Graham and my mum, they were my rocks. My mum and her partner Steve were always there for us and helped us in so many ways.

From Blake being delivered to being discharged, our journey on NICU was a huge emotional rollercoaster, but also an incredible experience and we were blessed to have such a beautiful and strong little soldier.

The NICU journey is very hard to imagine and understand unless you have experienced it. It changes you. It makes you realise how fragile life can be. It puts you on the edge of your nerves every day and when you get the news that you can take your baby home along comes more feelings of delight mixed with terror. NICU had been a safety net for so long, it was hard to imagine being without the experts and caring for our tiny baby at home.

On discharge Blake weighed just under 5 pounds. The main part of my fear was the size of Blake, he was so tiny, so fragile and vulnerable. I couldn’t even imagine him in a car seat, I could hardly breathe on our way home, I was so scared.

Unfortunately my story has an extremely sad ending, but in part 2 you will get to hear about our rainbow after the storm.

Sadly, Blake died at 5 months old. He had an enlarged heart, which wasn’t revealed until we had the inquest 10 months later. It’s a very long and complex story, but our rainbow baby, Flynn, is now 30 months old and thriving. Both our boys were conceived via the wonderful science of IVF so after losing Blake and deciding to try for another pregnancy we knew we would have to face another uncertain battle. There’d be more heartbreak. Flynn was born at 32 weeks…

My Employer is Giving Premature Baby Mums More Time: Will Yours?

Mum to identical twins and Tamba volunteer, Linsey Wynton, on how her employer, Waltham Forest Council, has introduced extended maternity leave to parents of premature babies.

Five years ago when I gave birth to identical twins, 11 weeks early, I had no idea I would be involved in publicising a campaign to bring about fairer pay for parents in similar circumstances.

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Linsey shares skin-skin time with her twin boys in neonatal intensive care

Fast forward to 2018 and I am in Broadcasting House, with the Deputy Leader of the council I work for as a press officer in Waltham Forest. He’s Councillor Clyde Loakes and he is about to announce a trailblazing change on BBC Woman’s Hour.

Our council is – we believe – the first employer in the country to offer extended maternity and paternity leave to parents of premature babies for the duration of time they spend in hospital up until their original due date.

“It’s a small thing we can do that will make a huge difference for families. I don’t understand why more employers don’t do this,” Cllr Loakes has told me. And he explains to Woman’s Hour presenter Jane Garvey: “We can wait till the cows come home for Parliament to legislate. But this is something we can do now.”

BBC womans hour

Linsey Wynton, Sarah Miles and Cllr Loakes at the BBC promoting Waltham Forest Council’s new initiative

We were joined by campaigner Sarah Miles, a trustee of The Smallest Things Charity, which wants the law to be changed so employers are required to offer extended paid maternity and paternity leave to all parents of premature babies. A petition by The Smallest Things calling for this has secured over 1850,000 signatures so far.

Sarah’s story moved me to tears. Six years ago she gave birth to twin girls 12 weeks prematurely. But she had no idea that her maternity leave from work would start the very next day.

One of Sarah’s twins, Charlotte, spent three months in hospital. Her other twin, Eva, was in hospital for six months and sadly passed away.

Sarah’s maternity leave was so different from what most new mums expect – months spent visiting a neonatal unit, listening to the constant beeping monitors, willing her girls to pull through and come home. She went through so many ups and downs, meeting parents along the way whose babies eventually thrived and others whose babies tragically died.

Soon after baby Eva’s death, Sarah was asked by her employers at the time if she would be returning to work. Because of her recent bereavement, and still having a very tiny baby at home, Sarah requested unpaid leave.

“I was not ready to go back to work. 40% of mothers of premature babies experience postnatal depression, and a report by The Smallest Things last year revealed 63% of mums of premature babies experience anxiety and 44% have flashbacks. I was suffering from all of these,” explained Sarah, who is now also a Tamba volunteer with the Bereavement Support Group.

Her employer was not sympathetic. In the end, Sarah had no choice but to resign from her job. She joined forces with other mums who had had premature babies, including Smallest Things Founder Catriona Ogilvy, whose first son Samuel was born 10 weeks early.

Catriona’s local MP Steve Reed introduced a Prematurity Bill to parliament, which called on government to extend paid maternity and paternity pay to parents of premature babies. Unfortunately it was dropped at the second reading. However, following a meeting with The Smallest Things, Bliss and Steve Reed, Business Minister Margot James MP requested guidelines be drawn up on how employers can best support parents of premature babies. The ACAS guidelines were published in March 2017 and was the first time the unique needs of families of premature babies have been acknowledged in employer guidance.

However, changes need to be made not just by employers, but in terms of statutory maternity allowance given that one in seven people in Britain is self-employed.

When my twin babies were born 11 weeks I was self-employed and so was my husband. So I was I was only entitled to 9 months statutory maternity allowance. At that time it was only £135 a week. And because I had been very unwell, with a diagnosis of acute and severe Twin to Twin Transfusion at 24 weeks of pregnancy, my payments ran out by the time my twins were six-months-old. With an older son also, and the lack of subsidised childcare, it was not viable for me to work until my twins were three. So as well as the sheer exhaustion, it was tough financially.

tamba twins

Linsey was not able to return to work until her twins were 3 years old

All I can hope is this small change that my employer has made will be the start of something much bigger for other parents in my situation in future. Cllr Loakes is now talking to the council’s contractors, which include Kier, who provide our refuse service, and partners, which include Whipps Cross Hospital. He wants them to make a voluntary change to support new parents of babies born prematurely.

Our story has had a lot of coverage, including an article in the Evening Standard, an item on BBC Radio London and TV coverage on BBC London and ITV London News. Hopefully it will be the first of many victories for The Smallest Things.

 

If like Linsey you’d like to ask your employer to extend parental leave for parents affected by premature birth, download our letter for employees and ask them to become a Smallest Things Employer with Heart by signing up to our Charter of Best Practice. 

You’re not being silly, if you’re worried get checked out – Guest Blog

One thing I never knew when I was pregnant was that I could have a premature baby.

It just wasn’t something that I knew about and it wasn’t something that I knew happened to people…. until now.

I was 30 weeks pregnant and I had been experiencing a pain under my rib cage on the right side of my body. It was about 1:30am and I got up, took some painkillers and tried to go back to sleep. I was still experiencing some pain, but it wasn’t excruciatingly sore, more like a dull pain, so I just got on with it. I thought it was maybe just the baby kicking me in the ribs.

Throughout the morning it was much the same, just a dull pain, nothing more. By lunch time it was still there and got a little more intense, but nothing that I was crippling over in pain. I decided to call the midwives at my local hospital for some advise. Due to my gestation they asked if I could come in just to get checked over.

When we arrived I was hooked up to a machine to measure my contractions. Whenever I was experiencing the pain it wasn’t showing as a contraction and I felt a bit silly being there at that point. As they didn’t really know the cause of the problem the midwife called for a doctor. He examined me and told me that I was 3cm dilated!

Time was a blur from then on.

No one can ever prepare you for the mix of emotions that you experience at that point. Sadness, worry, fear, confusion.

The doctor was trying to arrange transport, either an ambulance or a helicopter to transfer me to a hospital with better facilities for a premature baby.

My waters decided to break though and we no longer had the option of being transferred. I was to deliver where I was.

A doctor came and explained that there could be a chance the baby might not survive, particularly as they didn’t know the reason to why I was delivering early, and we would be best to prepare ourselves for that.

A few hours later, my baby was born weighing 3lbs 9oz.

I got to look at him for about 10 seconds before he was put in an incubator and taken away. He was perfect, just tiny.

He was born at 7:30pm, but we weren’t allowed to go and see him until 11:00pm.

It was the longest wait of our lives. We were just in a room not knowing what was going on. Was he okay? Was he going to survive?

When we got to go and see him it was very difficult to watch. A doctor was stood over his incubator manually pumping air into his mouth to help him regulate his breathing.

Our son got transferred to another hospital at 1am and we were discharged the following morning and headed up to be with him.

He progressed every single day, and amazed us all. He moved onto a C-PAP within a couple of days and started off by taking 1ml of milk per hour! He had episodes of jaundice, but they didn’t last very long before he was back to normal.

It was hard to look at your baby lying in an incubator with the tiniest nappy I’d ever seen, with all sorts of wires going into him.

I’ll also never forget the beeping from the machines around him, I can sometimes still hear them.

The nurses were amazing, and really are a credit to the hospitals. I actually don’t think they get as much credit as they should. And I will never forget when our son stopped breathing for around 20 seconds…. (but it felt like a lifetime for us.) My partner and I were panicking and not knowing what to do, the nurse on the other hand was so calm and just held him, talked to him and tickled his feet and he started breathing again! I couldn’t believe it, I was so amazed. I think this was the moment when we knew he was going to be cheeky!

One thing that I never got to experience was the moment you get to hold your baby straight after giving birth. It was so difficult, you kind of feel disconnected to your newborn in a way. We had to wait 6 days before we could actually hold our son.

The moment was amazing, and I will remember it forever, but I just wish it could have been different. We had to be so careful with him and could only hold him sitting right next to the incubator as he was attached to so many different machines.

I would say that one of the hardest parts of having a premature baby is when you had to leave them in the hospital and drive home without them. I would look over my shoulder into the back seats and just wish he was there. It just felt unreal, or that your baby didn’t exist, because he should be with you wherever you were.

It annoys me when someone says “you’re lucky, at least your birth was easy and that you didn’t have to push out a 10lb baby!”

Trust me, I was not lucky. I would much rather of pushed out a 10lb healthy baby than have a traumatic birth and an ill baby.

So, I just want to raise awareness that if you’re in doubt about anything, go and get you and your baby checked over to prevent delivering early. I think back to that day all the time… what if I just got through the pain and stayed at home, what if I gave birth in the car on the way to the hospital… the list is endless.

I actually experienced the same pain under my rib cage about a week after giving birth. This time it was a very excruciating pain that wouldn’t go away. I went to A&E and I had pancreatitis, brought on by gallstones so I had to have my gallbladder removed. We think this was the reason why our son was born early as the doctors couldn’t find any other reason.

Our son spent a total of 6 weeks in hospital and is now a healthy 20 month old who is meeting all his milestones, apart from he has a delay with his speech. He is an amazing little boy and we are so thankful to have him in our lives.

Guest post by Robyn McIntyre

Please help raise awareness by sharing on Facebook and Twitter just click on the buttons now!

Bonding with Alfie after the Trauma of Premature Birth

My son was born at 26 weeks.

Up until that point my pregnancy had been very similar to that of my daughters three years earlier. I had constant morning sickness so was medicated and felt pretty awful most of the time, but I’d carried Sally to term and had a natural birth with a wonderful outcome so saw no reason why this time anything should be different.

Alfie arrived very quickly without any real warning. He came 17 minutes after arriving at the hospital by ambulance and my husband was unable to be there as he was arranging care for our daughter.

I went into complete shock.

I wish now that we’d known Alfie’s gender beforehand, he was born with his placenta attached and even the vast medical team didn’t know his gender for 10 minutes as they worked to stabilise him.

I coped by detaching. I can still vividly remember and feel guilty everyday for the fact that during his rapid birth I focused on our daughter. I pictured her in my mind and reminded myself whatever happens I’ve got her. My mind continued to cope by focusing on her for at least the first 48 hours.

Alfie was transferred to a specialist hospital 60 miles away and we followed. I’d never left Sally over night before so was tormented by thoughts of her distress and just wanted to get home to be with her, but when I did the following day I felt judged for doing so by all but one wonderful nurses.

I returned within 24 hours and continued to do 48 hours with Alfie followed by 24 hours with Sally in shifts with my husband until Alfie was transferred back to our local hospital 18 days later.

I had bonded with Sally instantly when she was born, but she as been handed to me the second she was born and had barely left my arms in the days, weeks and months that followed. I got to touch Alfie’s tiny, tiny hand briefly as he was whisked away and then all contact was controlled, monitored and terrifying. Even the first time I held him after 13 days was hard as my instinct was to rock and stroke him but that was not allowed.

I tore myself in half to spend time with both of my children everyday but never felt I was giving either of them enough. When Alfie finally came home along with his oxygen my body and mind caved in and I suffered severe stress induced IBS and debilitating anxiety, not helped by him being readmitted with pneumonia and a collapsed lung 5 weeks later.

I struggled on exhausted and carrying the guilt that I had not bonded with Alfie straight away until I went to see my GP as I reached breaking point. To the outside world I hid it well, but that is not always a good thing. She got me counselling which identified that I had PTSD and post natal anxiety. It helped but I was still struggling and in the end agreed to try medication and wish I’d done it months ago. I still get anxious but I can manage it now and my IBS has reduced massively. I can look at things rationally now and know deep down that what matters is that I have bonded with Alfie not how quickly that happened.

I still feel haunted by his birth and first year of life, but I know now that I’m not alone in these feelings and that helps a lot.

The NICU experience does not end at discharge and everyone copes in different ways, but just because someone appears to be coping do not assume they are and just be there to listen and support.

Lizzie Miller

The Smallest Things & Pampers celebrate World Prematurity Day for 17 November 2017

Sponsored post

#PrematurityIs…

So much of the ‘normal’ birth experience is stolen from parents of premature babies. On World Prematurity Day we’ve teamed up with Pampers to raise awareness of the different journey through NICU

#PrematurityIs…

…fear. One of the overwhelming emotions you’ve told us you feel. Seeing your baby for the first time in an incubator, covered in wires, surrounded by bleeping machines, face covered by breathing apparatus… this isn’t how it’s supposed to be. What happened to the birth plan? For me, like many parents of premature babies, I watched my babies being whisked away to be resuscitated in the neonatal unit.

…finding a new hero. Watching my babies struggle and fight to put on weight, get over infections, breathe, grow, and eventually thrive filled me with awe and respect for their strength. They really are my heroes.

…a rollercoaster ride. As parents on the unit we’d often say it was one step forwards then two steps back. One day you’re celebrating your baby coming off oxygen and the next she’s back on CPAP because of an infection. The ups and downs are emotionally gruelling.

…changing your first-ever nappy through portholes. One of the most wonderful times in NICU was changing my daughters’ nappies and doing their ‘cares’ as it made me feel like a real mum. Six years ago I bought the smallest nappies available – Pampers size 0 – yet even they needed folding over and reached up to their armpits. I was really pleased to hear that Pampers has created a new range for babies weighing less than 1.8lb (800g) called the Pampers Preemie Protection Range and pledged to donate 3 million nappies to neonatal units around the UK & Ireland.

Since the launch of Pampers Preemie nappies, 61 of the 208 neonatal units have received their packs, with over 100,000 free nappies donated to neonatal units across the UK and Ireland.

…learning a new language. You quickly learn to ‘speak’ NICU and get your head around the acronyms. From NGT to CPAP via NEC, PDA, EBM and ROP, I can still remember them all six years on. To this day, I get asked if I’m a medic when I take my daughters to appointments. Nope, I’m a NICU mum and I know too much.

…celebrating the baby steps. In NICU it’s the small stuff that matters. I waited two weeks before I could have my first cuddle with my youngest daughter and I will forever cherish that moment. I remember the first day they were able to wear clothes, how every gram gained felt like a huge success, and going up a nappy size deserved a fanfare. Reaching these premature milestones meant they were one step closer to coming home and becoming mine properly. Here at The Smallest Things we love these cards created by Pampers and Bliss, which will be distributed for free to neonatal units across the UK .

…#NotMatLeave I found out weeks later that my maternity leave had started the day after I gave birth three months early. So those 197 excruciating days spent on the NICU all counted towards my maternity leave, meaning I had very little time at home before I was expected to return to work.

…having two ages. The innocently asked playgroup/bus-stop/passing-time-in-a-queue question I learned to dread: how old is she? No simple answer without a long story. She has a birth age and a corrected age. It’s complicated.

…Not over when you walk out of the NICU doors. Shortly after the euphoria of finally leaving the hospital and going home, comes the realisation that it’s not really over. Frequent medical appointments, hospital readmissions, and uncertain long-term outcomes are the reality for many NICU parents. It’s unsurprising that 63% of mums experience anxiety after being discharged from the neonatal unit. Almost half of premature babies have ongoing medical difficulties after leaving hospital.

In support of Bliss’ social media campaign, tell us what #PrematurityIs to you below or on Facebook, Twitter or Instagram using the hashtag #PrematurityIs and tagging Pampers. For every story shared, Pampers will donate £1 to our friends at Bliss!

Pampers has donated the fee for this post to The Smallest Things.

World Prematurity Day – It’s Never Too Late To Speak Out

What can only be described as what should have been one of the best chapters of our lives started off as one of the scariest time of our lives.

It’s something you think could never happen to you. 

Delivering your precious baby 8 weeks and 4 days early. Completely unexpected, the baby you’ve been carrying, getting excited about, your new life ahead…. 

Then the doctors tell you ‘he’s a tiny 2.13lb’. 

They take him straight off you, they recusiate him, they put him straight into an incubator with a oxygen mask on. 

He was so brave, yet so fragile.


It’s the complete opposite, directly at odds with the feeling you had been expecting. 

I felt robbed of my pregancy. 

Robbed from everything I should have expericed. 

I felt like I didn’t get the chance to be and to feel like a new mum. 

Every day Ted was in the hospital we didn’t quite know what to expect or what we would be told on the ward round each morning. 

Ted was just 1 week old when the doctors called us aside to tell us he’d had a bleed on the brain. 

As young parents we couldn’t quite grasp everything at once, everything that was happening. 


He was struggling with his feeding, struggling to gain weight and he was so up and down. He then had the bleed on the brain, fluid on the brain and everyday was so different and daunting. 

We stayed in the Ronald Macdonald Suite in Arrowe Park hospital for around 5-6 weeks while Ted was cared for in the Neonatal Unit. They told us he would probably be kept in until at least his due date unless anything improved and it seemed so far away.


My partner Chris went back to work and I just continued to in the hospital, counting down the days. It was the most bizare time of our lives. We joked it was like living in the ‘big brother house’, but the atmosphere was so quiet and lonely. We knew everyone there were going through one of the toughest times of their lives and we didn’t really want to engage in one another, not knowing what news they had just recieved downstairs. 

The staff in Ronald Macdonald really couldn’t have been any more comforting and welcoming, and the doctors and nurses in the neonatal unit we can’t thank enough. We owe them so much, without all the help they put in daily we wouldn’t be where we are today. 

Weeks passed and Ted was jumping rooms from Intensive care to High Depenacy and finally into the last room ‘The Nursery’. 


The feeding tubes slowly came out and the hot cot was introduced. He finally started to look like what some people would describe ‘a normal’ baby, ones without wires or tubes all over there bodys, ones you aren’t scared to hold or touch. 

People think that once you leave the hospital it stops there, that everything goes away and it’s all happy. 

That’s not the case. 

I couldn’t shake the feeling from my stomach that someone was going to take my baby away from me. I guess a little bit of me still can’t now and that is where 8 months in it hit me like a ton of bricks. I suffered hugely with anixety, another thing I never really knew about before. 


Ted was one and we finally got discharged from the hospital all together. That meant no more appointments and we could put some of the memorys to the back of our heads now we weren’t going back to the hospital and being reminded. Being told they was more than happy with his progess and he could be discharged was another one of the happiest days of my life, we joke but Ted actually clapped when the doctor told us, right on cue! 

Here is Ted-Joseph our hero 2 years & 4 months on. 


A little man who walks into the room and lights it up – cheeky, happy and full of mischief!

I feel as a prem mum that it is NEVER too late to speak out about how you are feeling and you’re never alone. So many other people have been or going through the journey others have been on. Together we are strong. 

It’s NEVER too late to raise awareness for these tiny precious little miracles, the ones who pull through, and the ones who are taken too soon.

World Prematuirty Day is on November 17th – will you share Teds story and help raise awareness?

Poppy Hobs
If you have a story to share, contact Catriona at smallestthings@yahoo.com

Remembering Eva: Babyloss Awareness Week and Wave of Light 2017

On Sunday evening, at 7pm, thousands of candles will be lit around the world to remember all the babies who have died. As Babyloss Awareness Week culminates in the Global Wave of Light, bereaved parents, friends and family come together to remember. Each flickering flame represents a tiny soul no longer here, a story of hope that ended in pain, a life not lived, enduring love translated as grief.

Eva Sophia Boyle

Eva Sophia Boyle

My own flickering flame will burn in memory of Eva, my daughter who died on 23 February 2012 aged six months following surgical complications and 197 long days in NICU. There will always be one missing from my family and there are days when living without watching Eva grow up feels like a life sentence. But I must go on. For my living children, and for Eva. She didn’t get a chance at life so I owe it to her to live mine to the full and to seek out the joy.

Ways to remember
For us bereaved parents, remembering our babies is all we have. So we find ways to commemorate our babies, to make sure their memories live on. We let off balloons on anniversaries, engrave plaques and pebbles, stitch quilts, hang stars on trees, make cakes, tell others, share stories, write blogs and light candles.

And it helps. It has helped me. Eva has inspired me to climb mountains, raise funds, start running, become a befriender, speak out and try to improve care. She’s doing amazing things despite not being here. Eva has introduced me to a wonderful, supportive community of similarly heartbroken parents. There is comfort in coming together with others who have lost babies. It’s a club nobody wants to join but when you find yourself sleepwalking through its doors, you’re so grateful it’s not empty and you’re not alone.

So on Sunday I invite you to light a candle at 7pm and let it burn for an hour, in memory of all the lost babies and also to show hurting parents they’re not alone. Please share your photos and tell us the names of babies you’re remembering.

Eva Sophia Boyle, this blog is for you.

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Eva’s sisters, Iris & Charlotte #WaveofLight

This post is also dedicated to Gia, Noah, Seamus, Laura, Charlie & Joshua, Heidi, Abigail, Bobby & Ryan, Sam, Jacob & George, Ethan and all the babies gone too soon. Always loved, always remembered.

#saytheirname
#babyloss
#babylossawarenessweek
#waveoflight
#breakthesilence

iPhone5 697
https://babyloss-awareness.org/about-us/
 

Written by Sarah Miles

 

Supporting Parents of Premature Babies – New Guidance for Employers 

Each year 95,000 babies in the UK require specialist neonatal care. Worry and uncertainty form part of the daily routine, and all the while mothers spend this time, their maternity leave, visiting their fragile baby in hospital. 

Returning to work is far from their mind. 


New ACAS guidance published today aims to;

  • support working parents with premature or sick babies 
  • help employers to support staff who have given birth to premature or ill babies

Business Minister Margot James MP said:

“Working parents deserve support at work, and those who have premature babies should expect nothing less than total backing from their employers at what can be an exceptionally difficult and worrying time. 

Most employers already treat their staff with compassion and flexibility. This guidance removes any doubt for parents about what their rights are and lets employers know how best to provide support.”

The Smallest Things met with Minister Margot James and Steve Reed MP to discuss the #NotMatLeave Campaign – Dec 2016

The Smallest Things helped to shape the guidelines, working closely with Acas to ensure that the realities of neonatal care as well as the ongoing difficulties faced by parents were included. 

Welcoming the new guidance, The Smallest Things Founder and Chair Catriona Ogilvy said;

“The Smallest Things has been campaigning for better employment rights for parents of premature babies for a number of years. The publication of the ACAS guidance is a big step, recognising for the first time the unique needs faced by parents following premature birth.

While we welcome the guidance, support must be available for all families affected by premature birth. We particularly welcome therefore the Ministers commitment to reviewing the guidance, including taking future additional steps if needed, such as legislative changes.”

——————–

The Smallest Things has campaigned for an extension in paid statutory maternity leave for mothers following premature birth. 

Recognising the significant emotional and financial cost of time spent in neonatal intensive care, extended leave would give a mother the emotional and financial support needed at a time of great stress and trauma – in turn leading to better postnatal health, a more positive return to work and better outcomes for babies development.

Last year a change.org petition calling upon Minister Margot James to extend maternity leave for mothers of premature babies gained nearly 130,000 signatures. 

In a Mumsnet Editorial Minister Margot James said;

“I am confident businesses will welcome these new guidelines and act on our advice, but I will of course keep progress under review, and do not rule out legislating in the future if our advice is not heeded.”

Too Small, Too Soon – I Couldn’t go Back to Work 

My son Louie was born in July 2016, 12 weeks premature. He spent 116 days in neonatal intensive care, nearly 4 months, and came home on at the end of October. It was the second best day of my life, the first being the day he was born – even though that was an emotional rollercoaster! 

Louie on the day he was born


Louie went through a lot during his stay in NICU; breathing problems, chronic lung disease, NEC, suspected meningitis, metabolic bone disorder, growth problems and a hernia repair. 

He came home on home oxygen as well as lots of medications. How could I possibly leave my baby after only 2 months of having him home?

I could have taken the rest of my years entitlement, then it would have been 9 months that Louie would have been home; but I still didn’t feel as if I could go back so soon. 

I couldn’t trust anyone else, apart from my partner who worked full time, to give Louie his meds and to check his breathing, making sure his oxygen was ok. And what about all his appointments and check ups -how could I take all this time off work? So I decided that I couldn’t go back….

I am currently a full time stay at home mum and even though it is hard financially it has to be done. 

Louie is now 14 months old and he’s still so tiny, weighing just over 14lbs. He isn’t sitting on his own just yet, although he thinks he can! His mind wants to do things but he’s just isn’t physically able. 

Would more time have helped? I think so. Longer maternity leave may have prevented me from handing in my notice. I could have used that time to adjust, to have found care for Louie, someone I could trust. Any mum will always do what is best for their baby and at the time and looking back I knew I was doing the best thing for Louie and for me. 

Louie aged 14 months


I really hope the government will look again into this matter. No one wants their baby to be born early and with medical problems. How can it be right that we are denied time with our babies or forced to give up work? Having a premature baby is nowhere near the same as being the mother of a healthy full term baby – our circumstances are totally different and our maternity leave entitlements should be too. 

Louise Harrison 

If you agree with Louise, please sign The Smallest Things petition to extend maternity leave for mothers of premature babies. 

My Tiny Warrior, Off to School

My little one Harry is starting school this September. He was born at 29 weeks, weighing in at an impressive 4lb 4oz (some of the weight was due to him carrying extra fluid because of a kidney disorder). He spent over two months in NICU. 


I look at Harry today and I never cease to be amazed at the remarkable little boy who stands before me. I think back to the beginning of his journey, and how we weren’t sure he would even survive. The most vivid memories are of times spent next to the incubator, putting my hand through the plastic porthole and placing my finger gently in the palm of Harry’s hand. Those tiny fingers would grip my finger firmly. It felt almost as if Harry were trying to convey to me that he was hanging on, he was fighting and I shouldn’t worry so much. The tiny fingers which were almost translucent, little nails barely formed, the skin red because his body hadn’t matured enough to cope with life outside of the womb. I remember when he would open his eyes and look around. These big, beautiful eyes which seemed so knowing. Harry looked (to me) like a wise little owl.  


When I took Harry for his last day at nursery in the summer, I held that little hand in mine. The hand that used to be so very tiny, so fragile, now gripped my hand squeezed it before he ran off after his little sister, laughing as they splashed through puddles. My tiny warrior. It struck me then how far he had come.

And now to school. I am worried about that first day, how am I supposed to keep it together? I will have to try and shut off my reality that I have watched my boy fight for his life. I have watched him get very sick over the past four and a half years, and I have watched him get well again. A constant cycle of normality and terrible fear. I have held Harry in NICU as his face turned grey and he stopped breathing. I have held Harry as he has battled infections and sepsis over the past few years. I most recently held him as he battled through low potassium levels, fever and dehydration (he has Bartter Syndrome, a rare genetic kidney disorder). To watch him go to school, there will be a huge amount of pride, but also the fear of wondering how he will cope. Given the battles he has already overcome, school should be no problem (says my rational side).


So, I will try my best as he goes to class. I will let go of that not so little hand. I will smile and wave and tell him to have a good day, and that I will see him at home time. And as I walk away, I may allow myself to feel the enormity of it and give in to tears. My tiny warrior, off to school!

Ellie Hepburn 

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If you have a story to share, please contact Catriona at smallestthings@yahoo.com 

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Bedrest – the Stuggle to Hold on to Tiny Life

My bedrest experience began in Jan 2015. I was 19 weeks pregnant with my 3rd child and was attending a follow up check at St Thomas’ Hospital in London, having had a stitch placed at 9 weeks in my cervix to prevent it opening early. An internal scan to check the stitch was doing it’s job yielded the worst possible news, my cervix had changed, I was 2cm dilated. 

I was distraught, the reason I had needed the stitch in the first place was because just 8 months earlier I had given birth to my second daughter at just 22 weeks and 6 days. With her my waters had broken at just 18 weeks, as a result of my cervix opening early. My daughter, Maya, lived for just 20 minutes. In my mind history was about to repeat itself, it seemed so unfair.

The team decided to place a further stitch, which they were able to do later that day and I stayed in hospital for a week. This was to be my first taste of hospital bedrest, the early days were a mix of sheer terror and boredom, forbidden to do anything except go to the toilet and have a quick sit down shower. Thankfully I got talking to fellow patients, some of whom were in a similar situation, there were bursts of conversation, the topics varied greatly, although a common theme was what to choose from the menu! Mealtimes helped break up the day, as did the ward rounds.


At 20 weeks I was discharged home. The feeling was that if anything would occur labour wise, little could be done to help the baby as she was under 24 weeks, so the plan was that if I made it to 24 weeks I would be re-admitted, and that way if baby did arrive she could be helped immediately.

Leaving hospital was difficult, although I desperately wanted to go home, I craved the reassurance of knowing staff were available if anything happened. At home my mind ran riot. Everyday was a challenge not to think the worst was going to happen, every trip to the toilet became a session of paranoid pad checking. Equally difficult was the challenge of staying on bedrest whilst everybody was running around doing the jobs I was meant to be doing; tending to my 6 year old, the school run, housework, cooking. Occasionally I would try to help my stressed husband, who was working full time by getting our daughter breakfast, or washing up, only to spend the rest of the day fretting that I had overdone it, panicking that those new twinges meant I caused further damage. Not knowing what was happening inside was torture.


At 24 weeks I returned to St Thomas’, although I was elated we had come this far I was also despondent about the situation ahead. St Thomas’ isn’t our local hospital, it is over 90 mins away from our home by train. For reasons I won’t include here I was unable to get the care I needed locally, so had sought a second opinion and that had taken me to St Thomas’ and their preterm surveillance clinic. It was the best place to be, but it meant only being able to see my husband and our 6 year old daughter Anjali on Saturdays. It broke my heart being separated. 

Whilst I was in hospital in London my husband continued to work fulltime. Anjali went to school then had to go into afterschool club. We had to hire a cleaner once a week and my friends between them helped cook meals and plug the gaps.

Whilst life continued in a different way at home I was left pondering the fate of our baby, who was growing bigger by the day. Each week on a Wednesday morning I was taken downstairs to the prem clinic, each scan revealed that slowly my cervix was dilating, the pain I had become accustomed to over the last few weeks was in fact the stitches slicing into my cervix as they struggled against the growing weight of the baby. The only thing slowing the whole process down was bedrest. From 25 weeks onwards my reality was that I would be having a premature baby, not if but when. I struggled to come to terms with this and found myself with the hours to kill becoming increasingly angry with the whole situation.

Prior to bedrest, prior to difficult pregnancies I had often joked how lovely it would be to be able to lay in bed and do nothing! As many of us with busy lives have, but the reality was nothing like the dream. Physically you ache all over after time, it’s difficult to get comfortable, I had to have daily injections to reduce risk of blood clots, then there was the surgical stockings…

Days were spent trying to keep grips on a sense of routine, trying to fend off boredom. The urge to sleep was enormous, but that meant being awake all night, and things always seem worse at night. The staff were lovely, chatting with them as they whisked about their day helped immensely. I would find myself asking them all kinds of questions, desperate for any light hearted conversation that could distract me from the thoughts of preterm labour. At times the atmosphere on the ward was incredibly tense, woman would come in early labour waiting for a bed on delivery, others would come for induction, some like me were waiting, praying for nothing to happen. During my time I became extremely close to several other patients who I remain in touch with today. We shared our fears, laughed together, listened quietly whilst we took it in turns to cry. Sadly one lady delivered her baby sleeping, we were all devastated, that little angel holds a place in my heart forever, as does her mother.

Time moved on, and at 28 weeks I was transferred back to my local hospital. I was delighted to be back nearer home, and had hoped that there may be a possibility that I could be discharged, however that hope was quickly dashed as I was nearly 6 cm dilated. Seeing my daughter and husband every day was the best thing ever, however here I had been placed alone in a side room and now the prospect of staying in hospital until delivery seemed even harder. The frustration of the past few weeks bubbled up and I became increasingly tearful. Although I didn’t want to deliver a premature baby the thought of another 8 or so weeks on bedrest in hospital seemed unbearable.

Wednesday 25th March I was exactly 29 weeks pregnant, it was the 1st anniversary of when my waters had broken with my second child Maya, and exactly 11 months since her birth. I felt increasingly agitated as the day progressed, not helped by the fact that the Consultant on duty was the same one present at Maya’s birth, nor that I found myself lying in the room directly below where she had been born. It felt like the universe was having a laugh at my expense and the sense of unease continued to rise. I was convinced that if my waters broke today, my baby would die. Isolated in a side room it was a real battle. The day passed without incident however, and that night, exhausted I fell into a deep sleep.

Thursday 26th March, at 5.20 I woke up feeling something was wrong. Upon moving to call the buzzer I immediately felt a warm gush, my waters had broken. Panicked I rang the buzzer and staff were in the room almost immediately. I had been on bedrest for 10 weeks, and now it would be coming to end, I wasn’t ready! Suddenly the prospect of further bedrest was what I wanted more than anything, as the reality that my baby could soon be delivered dawned.

I was taken to delivery and from there things moved pretty fast. After weeks of inactivity I was surrounded by medical staff. A scan showed the baby was transverse, there was real concern of cord prolapse and so the decision was made to deliver by c section. Neonatal staff came and briefly introduced themselves, theatre staff, so many questions. Then baby decided she’d had enough, her heart rate showed she wasn’t happy so the questions stopped and we were on our way to theatre, and at 9.53, Priya was born weighing 2lb 15 oz.


After 10 weeks of bedrest I was free to move about again, but it came at a cost. Priya was now for the time being confined to an incubator, her tiny body hidden in a tangle of wires and the guilt was incredible. I felt like I had achieved nothing. Being on bedrest is a real feat of physical and mental endurance, when you start it you have no idea when it will end, you hope to keep pregnant for as long as possible, complaining about it’s discomfort is immediately followed by a sense of guilt, at times it is simply impossible. That said, many of us do it, we enter it without thought, sacrifice our bodies and minds in our desperate bid to protect our unborn babies, we are mothers before our babies are born.


Now when I reflect upon that period, I can do so with a sense of pride too. I faced losing Priya at 19 weeks, I never dreamt I could hold on for as long as I did. There are days when I simply can’t believe I did it, not only me but my family too. The whole experience turned our lives upside down, our routines had become transient, subject to change at any moment, yet somehow we muddled through.

As my bedrest journey came to an end, Priya’s neonatal journey was just beginning, it would last 67 days and was a real rollercoaster that saw her fight for life at just 8 days old due to NEC and a perforated bowel. She came through and today is 26 months old. 


Her story continues, and as it does the value of those 10 weeks of bedrest becomes more and more evident. For those on bedrest now, I would simply say this – nothing lasts forever, bedrest will come to an end, just take each day as it comes, and keep on cooking!

Catherine Jayaram

Matthew and Thomas: 23 weeks – Born Too Soon 

Up until May 2016 we had the youngest surviving 23 weeker twins in the U.K. That’s quite a fact isn’t it? 

Maybe some would be proud of this and others, like me, fearing the prospect of unwanted media made us feel somewhat, isolated. Regardless, the fact my twins were born so early has to have been one of the most frightening times of mine, my husband and step daughter, Lucy’s life.


I gave birth to Matthew and Thomas on two separate days, 27 hours apart on 1st and 2nd October 2015. They were born at 23+2 and 23+3 week gestation. They weighed a tiny 520g and 560g and were only the size of my hands. 

Labour itself was traumatising. Because viability is such a controversial debate with the consensus believing that intervening with sustaining life should be from 24 weeks onwards (well, government and medical professionals anyway!)

The fear my husband and I faced during the 103 hours of active labour petrified us … my consultant wanted to save the boys and had me on magnesium sulphate, diamorphine, entonox…. everything possible to steer contractions away. But then shift changes at hospital and we were faced with several different doctors – some of differing views and some who would give us the harrowing facts that actually, these boys wouldn’t make it. 

However – their strong heart rate and no sign of distress told everyone otherwise.


They both arrived breathing, Matthew first – crying! He arrived making a sound!… Thomas, was a little more difficult as I had become so gravely unwell. 

It had been a matter of life and death for me. 

But they arrived and their journey began!

They spent 5 months in SCBU and defied medical history with fighting for their lives with NEC, infections, Pneumothorax, PDA, countless blood transfusions, chronic lung disease with home oxygen and ROP.

Thomas came home first and 4 days after, Matthew did.

These short days at home were the most craved for moments we will cherish for the rest of our lives… no doctors, no beeping of machines, no specific care times, cuddling in for as long as we wanted, dressing them how we wanted. It was amazing, but sadly short lived. 

They were 5 months old (1 month corrected).

On the day of Matthew’s home coming, Thomas had spent 4 glorious days at home with me before sadly, he became acutely unwell and struggled with breathing. 

He went into respiritory distress and I had to resuscitate him. I’m a nurse and you’d think something like this would come as second nature. But my “mummy” head just felt so frightened, both my husband and I went into “fight or flight” mode and then the next thing we knew, we were in PICU, Thomas intubated with saturations of only 34% and an initial diagnosis of bronchiolitis. 

Secretions sent and returned with positive of H1N1 influenza type A (swine flu). He was oscillated for weeks with an unknown prognosis. 

During this time Matthew continued to grow at home, without his twin. 

We spent long hours each day with visiting Thomas, some days Matthew wasn’t allowed to be with him due to cross infection. It was really such a testing time… back on that rollercoaster we all knew in scbu. I felt I had to tear myself into several different people. I started to become robotic in my approaches in order to make sure BOTH boys had their mummy.

After treatment from swine flu, Thomas eventually came off the oscillator and back onto the conventional ventilator. 
We thought there was progress however, each time they tried to extubate him, he would desaturate… as low as 17. He just couldn’t cope without the pressures and support the ventilator would give.

Eventually, we agreed a tracheostomy would be the way forward. Thomas seemed to thrive following this – as of it was the best thing to help him turn a corner.

Dad and I did some intense tracheostomy training, resus training and started to plan discharge. 

Matthew was allowed to spend more twin time with Thomas and we eventually roomed in after almost 3 months of utter turmoil. 


During our rooming in, Thomas became very quickly, acutely unwell. 

Too many secretions with 5 minute interval suctioning. He brewed an infection and became a PICU patient again. 

He progressively got worse and pressures were at the highest they could be with 100% oxygen requirements. 

He slowly started to desaturate. As a mother to watch the monitors show deterioration as your son smiles at you and sucks his dummy, you just can’t comprehend that he was getting worse.

But he did and the consultant asked to talk with me.

The worst news was given and Thomas was losing his battle. He was almost 8 months old.

We had to withdraw care and make that harrowing decision that no parent wants to face and that was to turn off his life support.

He passed away peacefully in our arms on 11th May 2016 with his twin, Matthew close by.

It’s been just over a year now. It’s been an excruciating, raw and sad time for us a family. Their big sister, lucy who was 11 at the time still attended to her exams because she wanted to do her little brother proud and didn’t want to take too much time off school.

My husband had to return to work because we needed an income – he suffered but “got on with it” as many of you all would agree, dad’s just do. He became my only solid rock – because he was the other person to witness and go through it. He is such a brave and strong man. We call him our hero because he just tried his best to look after us all and protect us from the sadness.

Matthew – continued to grow. He’s 20 months old (16 corrected) and for a baby that was given a poor prognosis due to his grade 3/4 right sided PVL… he’s now crawling, pulling himself up and enjoying nursery.



Me? … I was diagnosed with PTSD. A learning disability/mental health nurse with a mental health problem?!… it’s a stigma and it happens. I’m human and trauma can affect us in so many ways.


I spent months having horrendous flashbacks, triggers, grief disorder, isolation, losing friends because of my grief, completely shutting down. 

I couldn’t go to Asda without simple triggers and bumping into people who would ask “how’s the boys?”… whilst dealing with the ongoing additional medical needs of Matthew who needed me, needed me to be his mummy. 

I was scared of seeing people, I was scared of groups of people and petrified to interact and socialise. It was always safer to simply, stay at home. Because, this way, Matthew won’t get poorly and end up like his brother.

I agreed to have intense psychological therapy, along with pharmaceutical intervention (medication) I slowly started to open up and I blogged about the boys’ story and my PTSD in order to build awareness. To share with people the positive and negative affects it has to be parents of premature babies. To express immensely about viability. Blogging became a huge part of therapy for me. 

What has me “Just Surviving Somehow” is that I still have one of my two miracle of baby’s – he’s here, he’s happy and he’s thriving. 

Importantly, I needed to share awareness of PTSD. Over 60% of mothers going through a SCBU journey and loss of a child will experience post traumatic symptoms. Other post-partrum illnesses are on the rise and often, mum’s feel too afraid to speak out or seek help.

I feel able to share openly our journey as a family now. I’m in a bit of a better place to share it.

I’ve recently gained the courage to go back to work. It was such a hard decision considering I never thought I’d ever return to employment, when institutionalised in a hospital environment was almost 8 months, all day every day, feeling helpless and becoming overly obsessed with hygiene, I never thought I could ever return to nursing.

It’s a slow and progressive process but I’m getting there.

We miss Thomas so much. Not a minute goes by where we don’t think of him. Our home is covered with memories of Thomas and I talk about him all of the time.

Both our boys are truly amazing. The resilience in our preemie babies is breath taking. Their fight, their bravery …. they truly are angels of earth!


I’ll always remind Matthew of his brother, of both their fight, of their strong will to survive. 

I’m so proud to be Matthew and Thomas’s mummy. 

Once an NICU Mum, Always an NICU Mum 

As a little girl all I ever dreamt of was being a mum. I never dreamt of my career, I just dreamt of having my own family around me. Never in my wildest dreams did I think our journey would be so difficult.

In March 2013 my husband and I got married. We knew we wanted to start trying for children straight away and of course I thought it would happen quickly. Oh how wrong I was! 

I was soon sitting in the fertility clinic, being diagnosed with PCOS and prescribed Clomid. After a couple of rounds we got pregnant and we were elated! Our joy soon disappeared though as I miscarried. It was hard to take, but we picked ourselves up and plodded on. The consultant suspected I had a bicornuate uterus and thought he may be able to operate to give us a better chance at carrying a healthy pregnancy. I went down to theatre to get ‘fixed’ and remember waking up from the anaesthetic and asking the nurse next to my bed ‘am I fixed?’ She told me ‘no’, the consultant couldn’t operate and I broke down. The consultant came to see us and told me something I didn’t even know was possible. ‘You have something called Uterus Didelphys’. I looked at him like he had just told me I have two heads…. I was close – TWO WOMBS. Yes two wombs and two cervix!!

I fell pregnant for a second time in December 2014, but sadly miscarried. While I was waiting for a new cycle to start to take my Clomid I fell pregnant again! This time my consultant stepped in and prescribed me progesterone pessaries to use everyday and low dose aspirin to help the lining of my womb and the blood flow. It worked!

7 weeks came and went, 8 weeks, 9, 10…. When I got to 12 weeks I couldn’t believe it, I was starting to have hope this could really be it. I had a couple of scares with bleeding etc but all was fine. 

The risk of me being pregnant with uterus didelphys however was premature birth because my womb is half the size of a normal womb. I got to 26 weeks without a hitch and then I noticed that my baby boys movements had slowed right down.  I was admitted into hospital where I was given steroids injections and monitored every 4 hours. After two nights I was discharged home and was able to celebrate my birthday. 10 days later though, when I was attending my 28 week growth scan, they weren’t happy with babys size – yet again I was admitted to the maternity ward and monitored. 

My husband left the hospital to go home at 11pm and by 1am he was called back as they weren’t happy with babies trace. I was rushed down to theatre for an emergency Csection, delivering my baby boy at 28 weeks! 12 weeks early! I had no idea what to expect but it was my worst nightmare. A very poorly baby boy.


The first time i got to see my son I was called down because he had stopped breathing and they couldn’t get the ventilator into his lungs. 

I walked into a world I never knew existed. The beeps, the smells, the constant hand washing and antibacterial gel. Seeing my poor little human covered in wires and surrounded by nurses and doctors in a panic. It’s a sight I will never forget. The first time I met my son he was moments away from death. 

Thankfully they got his breathing under control and I was able to sit with him and start to examine this little man that we had made. He was beautiful, so tiny, but all ours.

The first two weeks is a blur, I remember feeling numb. I never dreamt it would be like this, giving birth to your child who is then snatched away, put in a glass house plugged in to 15 plus machines needed to give him life saving medicine. I was a spectator, I had lost out on that chance to be a Mummy. 

I was still mourning the loss of my third trimester – this isn’t how I should have been spending the last 12 weeks of my pregnancy, in a stuffy intensive care unit in the middle of summer, watching my child fight for every breath. 


Paralysed from medicine to help him get stronger. His face and body were so swollen. The staff used to come into work wondering if he would still be there. Sickest baby on the unit are given 40% chance of survival. That is not how I should have been spending that time. My missing trimester.

Being an NICU mum there isn’t a lot you can do for your baby, so the few things you can do you grab with two hands. Expressing is key for a premature baby, so anything I could do to give him the upper hand I was willing to do. Everything revolved around expressing, but it was a struggle. Why couldn’t I produce more? What is wrong with me? Why could I only fill half a bottle when I see other mums coming down with multiple! It was heartbreaking. Just call me the 30ml mum. In the end, due to surgery while my son was still in SCBU, my milk completely stopped so we had to move to formula. I had tried my best and as much as it broke me I knew I had given him everything I could.


Being an NICU Mum is lonely. Although you have all of these other people around you, you are cut off from the outside world… Cut off from reality. If you’re lucky, which I believe I am, you can find some special friendships while riding the rollercoaster of SCBU.


After a lot of ups and downs we FINALLY got to take our precious boy home! Bags packed and oxygen in tow we were leaving the NICU, our home for the past 97 days. It was scary, but we were so ready. Ready to start our life as a family of 3.


Our not so little boy is 22 months now. He has a lot ahead of him but we are so proud of how far he has come. The NICU will always be a part of our lives and even after not being there for over 18 months our minds always wander back there. Christmas, NYE, Easter any occasion we will always think of NICU and the families past and present. Each journey in the NICU can be so different but there’s one thing which will always stay the same ‘ONCE AN NICU MUM, ALWAYS A NICU MUM’.


With special thanks to Sophie for sharing her story through pregnancy and premature birth. 

If you’d like to help The Smallest Things continue to raise awareness, please SHARE Sophie’s story – it’s easy, just hit the Twitter and Facebook buttons now!

Got your own story of NICU and premature birth to share? Email Catriona at smallestthings@yahoo.com

New Report on Life After Neonatal Care

Today The Smallest Things published their 2017 ‘Life After Neonatal Care Report. Read the full Life After NICU Report 2017 here and see below for the executive summary.

EXECUTIVE SUMMARY

The Smallest Things Life after Neonatal Care Report shares the findings of more than 1,600 mothers and is thought to be the largest survey of the needs of children and parents following premature birth in the UK. The report, which includes first-hand accounts from parents, demonstrates the complex nature and often interlinking difficulties families face following premature birth. From maternal mental health, family life, ongoing medical needs, re-admission to hospital and special educational needs, the results clearly outline a lasting journey through which parents struggle to find support.

 

Maternal Mental Health

  • 63% of mothers report experiencing anxiety following discharge from neonatal care
  • One third of mothers reported feeling isolated following neonatal care.
  • 44% of mothers had flashbacks to their time in neonatal care.
  • 61% of mothers reported feelings of guilt following premature birth.
  • 26% felt that their health visitor understood theirs or their baby’s needs

Ongoing Medical Needs

  • 48% of premature babies were re-admitted to hospital following discharge home from neonatal care.
  • 46% of children have ongoing medical difficulties following premature birth.
  • More than half of parents worried about the long-term outcomes for their child.

 Family Life

  • Only 35% of mums were able to attend mum and baby groups.
  • Nearly half (49%) reported that having a premature baby affected their financial circumstances.
  • 1 in 3 struggled to keep up with social friendships following neonatal care.
  • 14% of mothers were unable to return to work as a result of their child’s health needs.

Special Educational Needs

  • 44% reported that their school age child had additional learning needs.
  • More than half of those had, or were applying for an Education, Health, Care Plan

Conclusions and Recommendations

The report concludes that there is an urgent need for continuity of care from hospital to home and that additional training must be made available to community practitioners in order to identify and support the specific needs of premature babies and their parents. A running theme throughout the report is the lack of awareness of the lasting journey of prematurity and the far reaching impact upon maternal mental health and family life.

Key recommendations include that all NICU parents must have access to timely and tailored psychological support, addressing the often complex mental health needs following discharge from neonatal care. In addition, parents should be encouraged to inform early years and primary school teaching staff of their child’s pre-term birth, supporting early identification of additional learning needs.