We are delighted that Tamba, the Twins and Multiple Births Association, is the first charity in the UK to sign up to our Smallest Things Employer with Heart Charter, supporting the needs of families and extending paid parental leave for staff whose babies are born premature or sick.
Announcing the news, Nicky Deans, Head of Finance and Operations, explained:
“The Tamba board of trustees have agreed that mums who give birth before 37 weeks will be entitled to an additional day’s leave and pay for every day between the date baby was born and the due date. This will be classed as compassionate leave and will be calculated at the full pay rate.
“In addition, if a staff member gives birth at 37 weeks or after and the baby requires neonatal care during their first 28 days of life, we will grant additional leave and pay for every day your baby spends in neonatal care during that time. This will also be classed as compassionate leave and will be calculated at the full pay rate.” Tamba has also updated its policy for paternity leave accordingly.
It comes at a time when the Government is conducting an internal review of the provisions for parents of premature babies and sick babies and those experiencing multiple births.
Welcoming the news, Catriona Ogilvy, founder and trustee of The Smallest Things, said:
“We are pleased that Tamba has taken this ground-breaking step of recognising and supporting families of premature babies and that it is the first charity in the UK to be awarded our ‘Employer with Heart’ accreditation.
Visiting a premature baby on a neonatal intensive care unit is a traumatic, distressing time for parents without the added worry of work and pay. It certainly shouldn’t count as parental leave. Tamba’s new policy gives parents precious time to bond with their fragile babies outside of the hospital environment and take care of them at home for longer.
We are delighted that Tamba is joining The Smallest Things in encouraging all employers to provide extended leave to parents of premature babies and working with us at Government level to hopefully see a change in policy.”
More than 315,000 people have signed the change.org petition calling on the UK government to extend paid parental leave for families affected by premature birth.
The Smallest Things is a premature baby charity, established in 2014, to support the needs of families and babies beyond the neonatal unit. If you would like further information about The Smallest Things Employer with Heart Charter, or would like to ask your organisation to sign up too, please get in touch at email@example.com
It’s hard bringing a premature baby home from hospital. The journey and worries go on. I’m trying to be honest with myself, I am struggling. Last December my son Bertie was born prematurely at just 27 weeks gestation. I’d had a complex pregnancy with bleeding from 13 weeks and placenta problems. I’d had numerous hospital stays and each time came away with different reasons. To this day the reason why is still unknown, but essentially my placenta was riddled with infections and I contracted sepsis.
Bertie was born by emergency C section at Gloucester Royal Hospital at 17.18. Later that evening, he was transferred to Bristol St Michaels, and then back to GRH after 8 days. I’ve said it a million times, and I’ll say it a million more, the doctors and nurses who work at both these hospitals are wonderful, wonderful humans who ultimately saved Bertie’s life. We are forever grateful.
Bertie spent a total of 120 days in hospital. It really was one step forward, two (or what felt like many more) steps back. This is something we were told right from the beginning and it really is true. He had countless procedures, blood tests, x rays, ultra sounds and blood transfusions. He contracted the dreaded cold in hospital, twice. Intubated, CPAP, high flow and low flow; all terms I knew nothing about before, but will now forever be etched in my mind. NICU nurses become your most trusted friends and make such an impact on your day, time spent on the unit and, this sounds corny, but the rest of your life! I will never forget them. Other mums are like angels. Speaking to mums who “get it” is the most comforting thing. All NICU journeys are different but there seems to be an unspoken understanding of what goes on behind those closed doors. I have made friends for life and I am eternally grateful for their support. I hope I helped them, the way they help me.
We bought Bertie home on 8 April 2018. At last we could be together as a family of 4. Mike, Charlie, Bertie and me. I thought the stay in hospital was the hardest thing I’d ever done, juggling a toddler at home and a baby in hospital was heart breaking and watching your baby constantly fight is indescribable. Mike and I were like ships in the night. I’d be at the hospital during the day, he would go to work, then he’d go the hospital in the evening and I’d be home with Charlie. We’d be lucky to eat a microwave meal together! The uncertainty of Bertie’s health and development was always on my mind, but bringing home a premature baby who has chronic lung disease and required 24/7 oxygen, who is so susceptible to illnesses and who is “failing to thrive” was and is, much harder.
I cannot comprehend why being at home as a family would be harder than our time in hospital, but it is. I feel a huge amount of guilt for saying that, along with a lot of other things. Like not spending enough time with Charlie, not spending enough time with Bertie, not being a “good” wife, the list goes on. One of my biggest guilt is why couldn’t I carry Bertie to full term. I do know that it is not my fault and that I did nothing “wrong”, but I still feel guilt. I was told by a wonderful woman recently that we must accept our feelings and it is just how we feel. I am working on that.
We’ve been home for 7 months now. In that time we’ve had 2 overnight stays in hospital, endless appointments with physios, occupational therapists, dieticians and Bertie’s fantastic consultant. Home visits from our amazing respiratory nurse, which always felt like a visit from a friend, but also difficult visits from health visitors who had little understanding of pre term babies. I feel immense pressure for Bertie to be “well”. I worry. I am swamped by worry. Worry that he is not developing as he is should be, worry that he will have long term effects of being premature, worry that I’m not giving him enough attention, worrying about his weight, worry that he might get ill again, worrying about more hospital admissions and worry that in all this I’m neglecting his older brother Charlie. Going into the winter is an exceptionally worrying time, a simple cold could put Bertie in hospital. It’s already happened twice and it’s not even been the cough and cold season yet.
In August, amazingly Bertie was able to wean off his oxygen in the day. Then in October he has come off oxygen at night too. This was a massive milestone for Bertie! I was so pleased but with this came more anxiety. The oxygen is almost a safety net, a comfort maybe. Take it away, it’s another worry. A huge ongoing battle for Bertie is his weight and feeding, he takes very little milk and has very little food. He has awful reflux which is not helped by a persistent cough. Recently we had a particularly bad spell and he lost weight. I feel like we go round in circles and it is never ending.
There is a massive lack of understanding and knowledge about premature birth, our babies and life after NICU. By sharing our story I want to help people going through the same and give knowledge to others. One of my biggest frustrations is that I feel a lot of people assume that just because we are home now that Bertie is “fine” and like a “normal” baby. I hope this at least goes a little way in showing this is not the case.
Along with guilt and worry, I am filled with jealousy. When I walk through the supermarket and see a heavily pregnant woman, I feel jealous that they’ve carried their baby further than I did, jealous that they will have a new born baby to enjoy and jealous that they don’t know about the NICU experience. I then I feel bad for having those thoughts and feelings. Another seemingly never ending circle that I hope with time will end.
I am grateful beyond belief to the wonderful NHS. It is still early days for me. I have two beautiful sons, I am so lucky, but also feel like I have lost who I am. In sharing our story hope to find myself again.
with thanks to Sophie for sharing her story, raising awareness of the ongoing needs of families following premature birth and neonatal intensive care.
In hindsight, I should have known, but nothing prepared me for how my world would be tipped upside down after giving birth to my twins at 28 weeks in 2007 – still nothing has!
days before the unexpected premature birth
I wasn’t prepared for the abrupt end to my pregnancy and the finality of the birth. The following days were not how I had imagined they would be when I was a naïve, unsuspecting first-time mum, blissfully preparing the nursery. I remember reading a pregnancy book and how I skipped the pages on Special Care because things like that don’t happen to young, healthy mums like me. How wrong could I have been!
No one spoke to me about the possibility of special care, even though I was carrying twins. No one spoke to me about being a high-risk pregnancy, even though I had swollen up just a week before and had a scan that showed I was carrying twin two very low. No one mentioned to me that I should start antenatal classes earlier as I was carrying twins and may have a shorter pregnancy. No one told me an awful lot.
As a result, when I did go into labour in the middle of a Monday night at 28 weeks, I was mentally unprepared. After a long labour, twin one arrived by natural delivery and was whisked away by a team of medics, leaving me with a consultant talking to his team about how twin two was in distress – no one spoke to me.
Next thing, I was whisked into theatre for an emergency C -section and woke to a photo at my bed side of a tiny doll that turned out to be my Isobel; and to a partner who was as shell-shocked as me but with no babies to hold in my arms.
Of course, I would go on to develop severe post-natal PTSD, anxiety and depression as we battled with our daughters, Imogen and Isobel, through ICU, CPAPs, brain bleeds, oxygen deprivation and so much more that I can’t even remember as my brain has blocked it out. No one asked me if I needed help, as I sat with my head in my arms sobbing at the side of their incubators. The consultant didn’t know how tiny he made me feel when he turned to me and said ‘ I think you realise what you’ve done now and how serious this is’; still to this day I don’t know what that meant, but it cut through me. Still no one mentioned emotional support for me.
10 weeks later, my girls came home, I was overjoyed! However, I had no support group, no Facebook group, no accommodation to live in with my daughters during their 10 week stay in SCBU, all that had made me desperately unhappy, isolated, depressed and extremely confused by how I felt.
9 months later, after home oxygen, nurse visits, physio appointments and feeling trapped in a world that I hadn’t planned, I finally spoke up. I went to see my GP to tell them that I was struggling and was referred for talking therapy. 3 months later, I was still waiting. So, I contacted PALS to express my thanks for the care that my daughters had received, but to condemn their lack of support for me. That got the ball rolling and 10 months after the trauma or premature birth, finally, my long journey on the road to managing my mental health demons got underway.
Now, 11 years later, my twins are well. They are healthy, they are happy, active, smart and wonderful. But as I write this today, I still cry. I still struggle to be happy for my friends as they have normal births and normal maternity leave. I still struggle with anxiety, to the point where it has affected my social life and career. I still mourn for the loss of the ‘normal’ experience and have never had any more children out of fear that it will happen all over again. I still can’t forget, and I still feel angry about how little emotional support there was for me. However, I am also strong, and my experience has also helped to make sure that families of premature babies now get timely help when their children are born too early or very ill. I tell my story, not to make you feel down or for sympathy; I tell it because I am proud that I used my experience to fight for change. Now, I know that support is getting better. I know that there are support groups, fast-track counselling, charities that are offering counselling sessions and I also know that my experience will now become a rarity. I can never change what happened and the impact that it all had upon my mental health, but I can change the future and I can use my voice to encourage others who are struggling with mental health problems following premature birth to demand the help that they deserve.
Isobel and Imogen are now 11 years old
With thanks to Louisa Owen for sharing her story and highlighting the mental health needs and emotional impact of premature birth.
To find out more about the mental health needs of parents following neonatal intensive care and how to support families, please see our ‘After Neonatal Intensive Care’ Report.
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.
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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If you have a story to share, please contact Catriona at firstname.lastname@example.org
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.
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, 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.
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 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.
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 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.
Blake home from hospital, precious memories with his mum
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.
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If you have a story of premature birth and neonatal care you’d like to share, please contact Catriona at email@example.com
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.
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.”
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.
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.
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
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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.
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?
If you have a story to share, contact Catriona at firstname.lastname@example.org
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.
If you agree with Louise, please sign The Smallest Things petition to extend maternity leave for mothers of premature babies.
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!
If you have a story to share, please contact Catriona at email@example.com
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I went into labour at 23 weeks + 2 days with my identical twin boys. It has truly been a roller-coaster ride of ups and down, twists and turns – and our story isn’t over…
Throughout the pregnancy everything was fine. I attended regular check ups and scans, and both boys were developing really well. Then, on the 15th October, I went into spontaneous labour. At 8.36pm twin 1 was born, followed by twin 2 at 8.42pm. Both weighing just 580 grams each.
It was the most terrifying moment of my life. Not knowing if they were going to survive was heart breaking.
Eli Jace – Twin 1 weighed just 580g
Both boys were rushed off to intensive care where the doctors and nurses worked round the clock to help them to survive. When I saw both boys my heart ached for them. I just cried. Seeing them struggling to adapt to the outside world was hard and we couldn’t do anything except watch, wait and cry. Sadly 6 days later twin 1, Jace Eli, passed away. He really struggled with the transition from womb to world and his tiny lungs were just too immature.
Twin 2 Kellen Jace was the weaker twin, having been given a hour to live after birth, but he was fighting to live. As days passed Kellen had so much stuff to fight – various infections, high blood pressure, a grade 2 bleed on his brain, chronic lung disease – he needed numerous blood transfusions and at 4 weeks old Kellen developed Necrotizing Enterocolitis (NEC). He had to have emergency surgery to remove part of his bowel and needed a stoma. It was touch and go if he was going to make it through the surgeryE.
Kellen – Twin 2, weighing just 580g
I got my first hold 55 days after he was born. It was truly magical. Kellen was ventilated for the first 13 weeks of his life, he had been given steroids to help wean him off the ventilator and 2 days before Christmas he was put on BiPAP. He was slowly making progress.
Dad had his first hold on Christmas Day which was the best present ever!
Laser Eye Surgery
Over the weeks Kellen became stronger and was weaned on to CPAP, but then in early January 2017 he was diagnosed with stage 3 Retinopathy of Prematurity (ROP). He needed laser eye surgery. Thankfully the surgery was a success and he didn’t require any more laser surgery, but due to Kellen being cannulated so many times the doctors were beginning to struggle to access him to give him his nutrition (TPN) and medicines. So, he needed to go back to theatre. They fitted a broviac line so doctors were able to have better access, however Kellen took a turn for the worst a few days later. He developed an e-coli infection for the 2nd time and ended up back on the ventilator.
The doctors were worried he would struggle to get back off it. His lungs collapsed and they were badly affected so he was given a second course of steroids. Kellen started to make progress a few weeks later and was put back on to BiPAP where he was weaned again onto CPAP and then high flow. He was making progress again and was determined to fight this nasty infection. Kellen managed to get onto low flow and continued to do well.
Kellen spent 138 days on NICU in the Jessops hospital in Sheffield before being transferred to Sheffield Children’s hospital on 2nd March. He was doing well, we were hopeful, but a week later he developed 2 infections – 1 in the broviac line and a chest infection. For such a tiny baby it knocked him sideways, really struggling with his breathing and needing to be put back on high flow.
Recovering from both infections with the help of strong antibiotics, Kellen then needed yet more surgery. The broviac line he had had fitted in January stopped working and as his veins were still so weak the doctors had to fit another line to keep access. The surgeon carrying out the surgery also managed to reconnect his bowel back together at the same time. Which was a massive relief as it meant only one additional surgery instead of two.
A Little Super Star
Since the surgery took place on 11th April 2017 Kellen has done amazingly well! He is still in hospital after 6 and a half months, but he is on the right road. He is gaining weight, now weighing 5.4kg (11lb 14oz) and has recently started bottle feeding. The nurses are looking to train me and dad up for his oxygen and tube feeding at home and although we haven’t got a date of when we can bring him home we are just so glad he has been able to fight through everything that has been thrown at him.
Kellen at 6 and a half months old, although just 11 weeks corrected age
Mum to premature baby, born at just 28 weeks, has written a letter to the neonatal nurses and doctors who cared for her premature baby at Burnley General Hospital. Lynsey, who spent every day of their 82 day journey through neonatal care visiting her tiny son, has shared with The Smallest Things her moving letter to the professionals involved in their special care.
Dear NICU Nurses and Doctors,
You have no idea how much you mean to us, or how you will always hold a very special place in our hearts. The love, respect, and admiration that we have for you can compete with no one.
You took care of our baby, when we, his parents didn’t know how. We didn’t know how to change his nappy without moving his lines. We didn’t know how to pick him up to change his bedding. We didn’t know what medication went where, or how to run the machines that were keeping him alive.
We tried our best, we really did. But he was so sick, and we were so scared. We were thrust into the NICU hours after his surprise early delivery. The first time we saw our baby he was in an incubator, and hooked up to more machines than we could count. You told us how we could touch him without stimulating him too much. You had tissues ready because you knew that we would cry. You encouraged us to interact with him even though you knew we were frightened too, you let us bath him, you let us change his nappy and didn’t get mad when we fumbled through three nappies and bed sheets because our little boy kept peeing before we could get the new nappy on. You let us change his nose cannula stickers, even though we both knew you could do it 10 times faster. We never felt more like his parents than at those times. You let us take home NICU souvenirs like his heart monitor leads and his first tiny dummy. When he opened his eyes you helped us get a picture of them. You answered every single phone call we made. You listened to us asking the same questions over and over and made us feel welcome being by his bedside day after day. You comforted us while we cried and encouraged us to believe he would come home.
You gave him, and us, every piece of your strength, day in and day out, for weeks. You did everything in your power and more to keep him alive. We feel like ‘Thank You’ isn’t enough, but it’s all we have to give you. You’re amazing, and you do things no one else can. So from the bottom of our hearts, thank you.
Lots of Love
Lynsey and Daniel & his big brother Eli xxx
Two years ago I woke early with period type pains.
I was 25+5 weeks pregnant.
I knew something was wrong, but wanted to dismiss it.
The thought of labour at this early stage was very, very scary.
For some reason, I thought the age of viability was 28 weeks. After realising the pains were more significant, more like contractions, I spoke to the maternity assessment unit. They told me to come straight in.
It was a Saturday, so I thought I’d leave dad at home with our 3.5 year old, and drive myself in. I was fully expecting to come home again later the same day. Sadly that wasn’t to be and our daughter was born by emergency section a few hours later.
Having been through an emergency section before with my son, though he wasn’t premature, I knew the drill. I tried to not think about whether or not our baby would survive. I did asked though, and was told she had a good chance. The operating theatre seemed to be jammed packed and noisy. But once it all began things became focused and hushed. The consultant told me my baby was a girl. I asked to see her so they lowered the screen; she looked at me through one opened eye and she looked so beautiful. I didn’t realise how small she was until later.
A tiny baby, far away from home
We were at a level 1 unit, but my new daughter needed to be in a level 3 unit. She was transferred as soon as a space was found, thankfully not too far, but still a two hour drive away. I was transferred the next day and got to saw her later that afternoon.
She was so tiny and hard to make out with all the wires and tubes. The next day I asked on the ward round what I could do to help and they said express milk. I didn’t think I’d have any yet, but after hard work, tears, determination and good support, I was lucky to get a good supply going. It really was the best thing for her and felt so good to be able to DO something. I was expressing far more milk than she was taking, so was able to donate to the milk bank. She luckily had very few problems on her journey through NICU, apart from giving us a big scare on April fool’s day. She was suspected of having Necrotising Enceterocolitis (NEC), but thankfully it didn’t develop. She was on and off antibiotics a lot and up and down with the amount of expressed milk she was taking – it was difficult, but we got there!
Our other difficulty was that I was discharged three days later; we were two hours from home, I didn’t know the area and could barely walk, never mind drive! There was little coordination between the maternity and the neonatal units. I was told there was an on-call room, but that it probably wouldn’t be available for more than two or three nights. Luckily, as it turned out, I managed to have it for the full six weeks of Isla’s stay, and the neonatal unit were brilliant at ensuring this. They also provided me with a daily meal ticket and ward breakfasts and lunches. It wasn’t possible for my son and partner to stay, but we were loaned a flat one weekend and they did day trips once or twice a week. It was very hard being separated, especially for my young son, but it was the only way to manage it. I felt I needed to be there 100% for my baby, so I knew I’d given her everything I could. I generally used the weekends to go home and have a much needed break, but it really is an area of neonatal care that needs improvement, as it’s not uncommon, especially in rural areas for mum and baby to be separated more than they should.
Kangaroo Cuddles and our Extended Family
I soon filled my week days with expressing, sitting by the incubator, and occasionally getting cuddles. The second most important thing, that I would advocate, is Kangaroo care. It has proven benefits for both and mum and baby, once baby is medically stable enough, and it was the best thing for me and Isla. It enabled us to regain some of the pregnancy closeness we’d been robbed of. Most days we would have one or two skin-to-skin cuddles. I have a vivid memory of a very alert tiny baby lying on my chest and looking up at me with the biggest eyes. It was so amazing, at only 30 weeks, and all the other neonatal midwives came to have a look. All the neonatal staff were great and I soon got to know the group of midwives who looked after her, and she was popular with them. Together with the other mums in the expressing room, they became our extended family.
After 6 weeks the day came when Isla was well enough to return to the local unit. From there she continued to make a steady recovery and I was able to have a much better home/hospital balance. I became more involved in her daily cares and once she was out of the incubator, gave her her first bath. The last thing to come was establishing breastfeeding, but that suck, swallow and maintaining breathing action is tricky for little ones!
Isla spent 8 weeks at our local hospital and came home two days before her due date. She was sort of breastfeeding and topped up with bottles and came home off oxygen. She weighed 5lbs and was still tiny, but at least she fitted in the tiny baby clothes range now.
The worry of being at home
Being at home was nerve wracking to start with, and seemed such a huge responsibility. I think you never stop worrying, and we had good aftercare. You somehow need to reclaim your baby and trust your maternal instincts – that comes with time. The thing I was least prepared for was the innocent question of ‘how old is your baby?’ Even now I find myself explaining our story and her two ages. She hasn’t caught up with her corrected age, never mind her actual, and as she reaches the age of two they will stop correcting her age.
She is our beautiful little lady, as she was nicknamed by the neonatal staff, and does amazingly well. She’s crawling and pulling up to standing but not yet walking. It’s a lesson in not comparing to friends babies and measuring her progress from where she started – a 2lb scrap of a thing that fitted into my cupped hands.
She is a delight and such a happy thing. We held a fundraiser for the neonatal units to coincide with the first world prematurity day of her life, and have taken her back to both neonatal units. We are eternally grateful and can never thank them enough for their kind and compassionate care, who together with friends and family, made such a difficult journey bearable.
With special thanks to Beth Nightingale for sharing her story with The Smallest Things.
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Our journey started last April when our son Jake was born suddenly 10 weeks early. Nothing can prepare you for the journey that was about to start and we were lucky that he was a healthy 1.53kg – a good weight for a 30 week premie!
The dreams you have of holding your baby when they are first born, the pictures capturing those first precious moments, are shattered. And instead you are filled with loss, longing to hold a fragile baby. With the tubes and wires, it’s not what you imagined, but the nurses help and support you with your first kangaroo care cuddle – and it’s worth the wait!
These small steps that most parents take for granted are celebrated along the rollercoster ride of neonatal care. There are bad days, when all you do is hope and pray that they pull through, the days without cuddles when all you can do is sit and wait, knowing you would give anything to swap places with your baby.
What you can do is express your milk, but this was hard work and mother nature didn’t make the job any easier. While some mums filled bottle after bottle, I bearly made enough, expressing throughout the day and twice during the night, just to keep up. This will always be the bit I feel guilty about, Jake didn’t take to breastfeeding no matter how hard we tried. The nurses were amazing in supporting us, (I’d never had so many people see my boobs!), but no matter what it just wasn’t working and after a few days and 12h with no wet nappies we tried a bottle. He gulped it down! It’s not what we had planned, but none of this was. I cried loads and will always feel guilty that I didn’t breatfeed – but he is healthy and that’s the main thing .
We were extreamly lucky and made a special bond with two other wordering familes. Going through something like this can bring people together and sometimes you have to take the positives of what life throws at you. The amazing team that works in SCBU are all angels and I could never repay the times they saved Jake’s life. The times they supported us – the hugs, the chats and the occasional light moment of laughter – we missed them hugely the firate few weeks we were at home.
The journey doesn’t stop when you go home though and for us it seemed like the begining of weeks of obsessing about infections. Hand gel became my best friendnand no one was allowed in the house with the slightest sniffle. The first cold at home was hard and I spent the whole day scared he would end up back on a ventilator. It’s hard to admit, but it was terrifying bringing him home. At least when he was in hosital the staff could keep him safe and knew what to do if he had an infection. But with time this got easier.
By the time we were ready to go and meet ‘normal’ mums and babies I was half way through my mat leave. This was my next challenge, of always feeling like I had to justify why Jake was slightly behind and in knowing how to explain his early start and corrected age. I’m so proud of my reslient, funny and sociable son and wouldn’t change a thing, but it was sometimes hard to hear other mums stories.
It does get easier and I remind myself that I am one of the lucky ones. I am currently due to go back to work on friday to a job I love and Jake has settled into an amazing setting which he loves…
…..but I still feel cheated from my full maternity leave. Seven weeks in hospital and then by the time I was finally ready to fully embrace mummy life if feels as if half of it was gone already. It’s been a long, and at times uncertain, journey – and now together we’re about to embark on the next chapter!
With special thanks to Claire Mountain for sharing her story with The Smallest Things.
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On Mother’s Day last year Susannah Tucker should have been 23 weeks’ pregnant. Instead, she was watching her son fight for his life in NICU, wondering if this would be the only Mother’s Day they spent together
Mother’s Day 2012: painful, following an early miscarriage the previous December.
Mother’s Day 2013: cautiously excited, as we made our way through the first trimester of our boy.
Mother’s Day 2014: a day with my husband and son, blue painted foot and hand prints, photo memories.
Mother’s Day 2015: starting to hope for a brother or sister for our eldest.
Mother’s Day 2016: our life turned upside down the day before.
On 5 March 2016 our little boy Alec was born at 23+5 weeks’ gestation, weighing 1lb 9oz (709g). Whisked away from us following his lengthy resuscitation, we had followed on after the ambulance who had transferred him to Addenbrooke’s.
And now he was there, fighting for his life.
Love and care
During the early hours of March 6, Mother’s Day, I was wheeled around from the ward to see my tiny, tiny boy. I chatted with the nurse Felicity (who became a very favourite and special nurse) and she brought out a little bag and handed it to me. Inside were a few items selected especially for Mother’s Day – a notebook, hand cream, pen etc, and, most special of all, a small ceramic heart with some tiny footprints on it.
Susannah with her gift from Alec, aged one day, on Mother’s Day in NICU
‘Are these Alec’s footprints?’ I asked hesitantly, barely able to believe that they could be. Felicity replied that they were. Overwhelmed by the love and care of the NICU staff, to produce this special keepsake for all the mums that day, all I could think was how amazing it was that I’d had the opportunity to have the footprints at only a day old, not something I’d done with my older boy Evan. I was also acutely aware that this ceramic heart was going to be something I’d treasure forever, but potentially in a box of painful memories.
Alec’s footprints – a special Mother’s Day keepsake from the amazing nurses
Our older boy Evan (who was two and a half at the time) came to visit Alec for the first time that day and I had both my little boys together. Again, I couldn’t shake from my mind that this was likely to be my only Mother’s Day with both of them. It was a special special time and Evan was so interested in his little brother. Fast forward a year and they adore each other.
Some other special mothers came to see us and meet Alec that day too – both our mums (who didn’t get cards from us, sorry!) were seeing their new grandson, yet feeling overwhelmed with how to support us – it was happening to their children. My sister came to meet Alec, pregnant at roughly the same gestation (her son eventually born on Alec’s due date) – every time she visited I could see in her eyes the awareness that the baby growing inside her was a similar size and shape, and the overwhelming feeling of needing to keep him tucked up safely inside.
I couldn’t hold Alec. I couldn’t touch him or kiss him. I couldn’t look into his little eyes (they were still fused shut). I was too nervous to change his nappy. However, on that first Mother’s Day, I was able to feed him my milk through a tube for the first time. I was fulfilling something in my role as his mummy. A different Mother’s Day, but one I’ll remember forever.
Returning to ‘normal’
We recently celebrated Alec’s first birthday on the beach and it was a very special day. This year we’ll also be celebrating my mother-in-law’s 60th birthday on Mother’s Day and I’m looking forward to a relaxing, low-key day. After all the drama and fear of NICU, we’re craving some ‘normal’ family time, enjoying the simple pleasure of being together.
Susannah and Alec on the beach celebrating his first birthday earlier this month
With special thanks to Susannah for sharing her story for Mothers Day.
You can read more about Susannah’s journey with Alec on her blog here
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Second in our special series of Mothers’ Day blogs, Becca Hilton tells The Smallest Things why her first Mothers’ Day as a mum will stay with her forever
I was expecting my first Mothers’ Day as a mum to be full of love, comfort and joy. Yet the harsh reality was very different. Yes, I did feel the love but I was somewhat lacking in the comfort and joy as my darling little boy Max was in NICU [Neonatal Intensive Care Unit].
The day was not only emotional because it was Mothers’ Day, but it was also my birthday!
2016 was the first year my birthday had fallen on Mothers’ Day and that did make me wonder… Maybe Max had come early for that very reason, so that I could spend those two very special occasions with him?
Not how it was meant to be
Waking up on that morning I felt excited but also disappointed. I couldn’t wait to go and see my little soldier but I couldn’t hold back the sorrow knowing that it wasn’t how it was meant to be. My husband had organised dinner for us that evening but it didn’t feel right. I didn’t feel like celebrating either occasion.
When I arrived at the hospital that morning it felt like just another day but when I saw Max he was in an open incubator for the first time! Previously he had been in a closed incubator with two portholes I had to open to touch him or change his nappy. It was the best Mothers’ Day/birthday gift I could have asked for. Taped to his incubator was a lovely poster one of the nurses had made. It had Max’s face inside a flower wishing me a ‘Happy Mothers’ Day’. My heart melted.
A day of mixed emotions
All I wanted to do was give Max a big squeeze but of course I couldn’t – he was too delicate. Experiencing Mothers’ Day while your child is in NICU is a strange feeling. It’s hard to describe as I had so many mixed emotions.
On this day I spent my usual seven hours or so with Max; soaking up every minute with him. Every smile, every cuddle and even all the windy pops (he’s always been rather gassy!). I didn’t want to go home, I didn’t want to leave him.. on that day more so than ever.
Overall I was just so glad and felt blessed that Max was here at all and my first Mothers’ Day/birthday with him was the most special time and will stay with me forever.
So as I approach my second Mothers’ Day I reflect back on and remember my first… and look forward to many, many more! I hope that yours is filled with everything that you expect and more.
Kicking off our special series of Mothers’ Day blogs, Serena Di Murro tells The Smallest Things about the day she saw her daughter Elysia properly for the first time.
My first Mothers’ Day was 6 March 2016 and it is one I shall never forget. It was truly bittersweet! I gave birth to my daughter Elysia, weighing 885g, at just 25+2 weeks on 31 January 2016. Mothers’ Day last year was exactly five weeks later when she was 30 weeks gestational age. I shouldn’t have even been a mother by then – I should still have been 30 weeks’ pregnant. It was certainly not how I ever imagined my very first Mothers’ Day to be. Elyisa had been intubated [on a ventilator] on the first day and I hadn’t really looked at her properly as I was too much in shock and there was a lot of tape obscuring her face. On Day 2 she transitioned to CPAP [Continuous Positive Airway Pressure] and spent the next five weeks on that.
Struggling to connect
CPAP involves a breathing mask and hat that completely covers a baby’s face. Elysia also had a feeding tube so I had absolutely no idea what she looked like for that whole month. I had held her for the first time when she was two weeks old on Valentines Day but struggled to connect with her because she was so tiny and drowned in all the equipment. I held her every day for skin-to-skin contact, but the fact I didn’t really know what her face looked like was surreal and meant I never felt like a mum at all. Every day I would go in and hold this tiny fragile being and struggle to ‘feel’ something, but it felt like I was just going through the motions.
‘Seeing’ my baby for the first time
However, when I arrived at the NICU [Neonatal Intensive Care Unit] on Mothers’ Day last year the CPAP was gone! In its place was a small nasal cannula and at long last I could see Elysia’s face. I noticed she looked so like her dad and for the first time I saw this little person and not just a sick, fragile baby. I will never ever forget that day’s Kangaroo Care… she looked right into my eyes and I got a sense that she could ‘see’ me just as I ‘saw’ her for the first time. It was like she too felt more connected to me now that the big mask, which had been such a barrier between us, was gone.
Serena ‘seeing’ her daughter properly for the first time on Mothers’ Day last year
Tears slid down my cheeks as I looked at her tiny little face. I have a video of this moment that my partner made and now, over a year later, I still cry every time I watch it. There are no words to explain it. On Mothers’ Day 2016 I finally became, and most importantly felt like, a mother after five long weeks of cuddling a baby hidden behind a mask. I treasure that moment and am so happy we caught it on video.
Elysia now weighs over 18lb (8.2kg) and is thriving. Looking back, last Mothers’ Day was a defining moment in our journey and shows that there can be beautiful moments in the NICU when we least expect it. This Mothers’ Day I will reflect on our time in hospital and spend all day looking at Elysia’s sweet, now very chubby face… just because I can 🙂
Lynsay got in touch with The Smallest Things after her twin boys were born premature following Twin to Twin Transfusion Syndrome (TTTS).
“I’ve spent a long time wondering how I can raise some awareness, I really want to get something positive out this horrendous experience. That is why I want to share our story….”
Lynsay starts by telling us a bit about her pregnancy:
Unfortunately, I didn’t have a very good pregnancy. Initially, other than being extremely tired and showing quite early everything was fine. We went for our first scan at 11 + 3 and it was there we found out the shocking news we were expecting twins! After the scan we announced our pregnancy to everyone but that same night at around 3am I woke up bleeding.
An ambulance took me to hospital where I was monitored for a few hours. We were told that if I was having a miscarriage there was nothing they could do. I was heartbroken. It was New Year’s Day and I couldn’t get a scan until the Monday. It was the worst few days of my life. Luckily the babies were fine, but I continued to bleed on and off until 16 weeks. As you can imagine it was incredibly stressful.
Twin to Twin Transfusion:
At 20 weeks we were diagnosed with stage 1 twin to twin transfusion syndrome. Not many people know what TTTS is, I have to admit I didn’t. TTTS is a disease of the placenta that affects around 10% of identical twin pregnancies. There is a donor twin (Noah) and a recipient twin (Harley). The transfusion causes the donor twin to have decreased blood volume. This in turn leads to slower growth and little to no amniotic fluid.
Initially I thought this meant that only the donor twin was at risk but actually the condition can be fatal for both twins. The recipient twin becomes overloaded with blood which then puts a strain on their heart and can lead to heart failure. There are 5 stages of TTTS, stage 3 and upwards are the danger points with stage 5 being the death of one or both babies. It’s a truly awful disease that takes many babies.
From being diagnosed we were scanned weekly and at 23 weeks we were given the news we had been dreading – it was now at stage 3.
We had a few options; we could wait it out, do sacrificial treatment or be referred to another hospital for laser treatment. After a lot of agonising and research we decided to go with laser. We travelled the 200 miles to Birmingham hospital where I was told it wasn’t stage 3, it was only stage 1 and they couldn’t do laser anyway because of the position of my placenta. We left feeling elated, but I was still anxious.
Our consultant back home though still believed it was stage 3 and offered sacrificial treatment again, we refused. The best we could hope for was I’d make it to 28 weeks when I would have a planned c section.
“… the most traumatic experience of my life”
Unfortunately, at 27 + 3 I discovered blood when I went to the toilet. I was also leaking what I believe to be my waters. I went to hospital where they monitored me over night. The next afternoon I was taken for a scan and they discovered the bigger twin was in distress. I was rushed straight to theatre for an emergency c-section and it was the most traumatic experience of my life.
On the 21st April Harley was born weighing 2lb 2 and his twin Noah followed a minute later weighing 1lb 6. There were no cries. They worked on them for around 5 minutes (felt like forever) before we were told they were alive but they had both been resuscitated.
I like to think Harley saved his brothers life; although it was him showing distress that caused them to give me the emcs, Noah would not of survived much longer inside of me.
Neonatal Intensive Care:
“I can’t explain what that’s like, to not even remember the first time you saw the babies you so desperately wanted and loved.”
The boys were whisked off to NICU while I was being stitched up and taken to the recovery room. Josh went with the boys which I was pleased about. I wanted with every part of me to get up and go and see my babies, but obviously I couldn’t. I can’t even say how long it was until Josh came back with an update, but it felt like an age.
It was around 5 hours before I finally got to see them and to be honest I don’t even remember it – shock, the drugs or maybe a combination of the two? I know I was wheeled there in my bed, but that’s pretty much it. I can’t explain what that’s like, to not even remember the first time you saw the babies you so desperately wanted and loved.
The true extent of how bad it was didn’t hit me until the next day, which also happened to be my birthday. It was when I saw the boys for the first time whilst standing up out of my wheelchair. Looking down on them in their incubators it hit me how small they were and all I could think was how will they ever survive this? Noah’s eyes weren’t even open yet, still fused together.
The consultant came to my room and told us that Noah would most probably die, his lungs just couldn’t sustain his tiny body. In that moment my heart broke into a million pieces. I had twins, I had given birth to two babies, I loved them, I had to leave that hospital with both of them. I found out much later that Josh had actually gone to their consultant and begged him not to let Noah die on my birthday. It reduces me to tears every time I think of that.
A Rocky Road:
It was a very difficult journey and a rocky road but Harley did extremely well and came home from NICU after 7 weeks. Noah was in hospital for more than 6 months mainly due to his lungs along with a few other issues.
We had always been told if he survived he would come home on oxygen but he defied all the odds and on the 29th October 2016 came home and without any oxygen! He had been dependant on some kind of breathing support right up until a week before discharge.
Blessed – A Family of Four:
I know we are so incredibly blessed that they made it and we are now a family of FOUR.
On the whole the boys are doing well; obviously they are still affected by their prematurity and the TTTS, and Noah is even further behind in milestones due to his long hospital stay – but I want our story to give hope other families.
TTTS can be a devastating and traumatic diagnosis, with the huge amount of uncertainty that comes with it. I hope through our story we can raise awareness and offer hope and support to other families.
With thanks to Lynsay Fletcher for sharing her story – if you have a story to share contact The Smallest Things at firstname.lastname@example.org
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As I entered the neonatal unit on December 12 2015 for the first time, I was numb.
My children – Isabelle and Jack – had just been born at 27+5 weeks and the sense of urgency within the room was clear. Doctors, nurses and other medical staff crowded around them, performing all the necessary tests to gage what was going on within their tiny bodies.
I just wanted to do something to help – anything at all – but I was helpless and stood back as X-Rays were taken and lines were fed in to get vital medicines into them.
My mind was focussed purely on them but I was forgetting someone just as important – my partner.
On November 1 at just 21+6 weeks pregnant the waters to the bottom baby (Isabelle) ruptured and she was rushed into hospital and placed on a ward.
Everybody expected her to give birth to two still born babies within hours but somehow she defied huge odds and kept them safe inside for almost 6 weeks – a time when doctors could step in and try to save them.
At 9.15am on December 12 everything was fine but by 9.35am she had delivered. A cord prolapse on the ward led to a full scale medical emergency. Rushed to theatre by a huge team, she was given a general anaesthetic and the twins were delivered.
Once she came round, I can only imagine the pain she was in after such a traumatic ordeal.
But there I was, thinking only of the twins and somehow unable to grasp on to her pain.
Looking back I feel full of guilt that I didn’t spend more time with her on the day of their birth, instead flitting between the neonatal unit and recovery.
In truth my mind was in pieces – there was no logical thought process going on but as the days progressed we both began to get hold of our emotions a little and take stock of the situation.
For me, it was all about concentrating on getting these little miracles well and out of hospital.
In the background, my partner was struggling with the physical and mental effects of the ordeal and in hindsight, I didn’t pay enough attention to that. All I needed to do was give her a hug, go for a drink in the café away from the immediate chaos or something to take her mind elsewhere for five minutes every now and then.
Once the twins were home in late February, I hoped we could start normal family life. I went back to work and my partner was at home on maternity leave. Having been surrounded by monitors giving us every medical stat in an instant, it was a frightening prospect having to go it alone without the technology, but I didn’t realise just how terrifying it was for her being home alone.
At times she struggled and seemed on the edge mentally. I felt more mentally intact but then again, I was back at work, getting normality back – she was doing anything other than getting normality.
Her mum would be a regular visitor and that support helped but a little friction built with my annoyance that the mother-in-law to be was almost living with us. She was a great help and did absolutely nothing wrong but I wanted it to be our family home.
Again, in hindsight I realise she needed that support and sure enough within a few months she was standing on her own two feet and going it alone during the day.
I guess what my story maybe shows is that men just aren’t fully in touch with their partners after a premature birth. Yes, we all feel the emotional side but men don’t feel or experience the physical trauma and that understandably leaves memories that are hard to banish.
There’s also the guilt that mothers can feel. The feeling that their bodies let their babies down. We all know that isn’t the case and that nature just handed out one of its harshest cards but it’s something that us men have to try and get our heads around.
If I was to speak to myself back then I would say ‘take a bullet’ more often. On days when she said things that maybe sounded irrational to me, go with it and genuinely take her points on board.
Whenever she needed a little support, try and put it in place where possible. Whether that is by having the odd day of leave from work, getting a relative or friend over or looking for a group where she could liaise with other mums.
It’s not easy being the dad of a premature baby, but I think we have to remember that mum has been through the mill in many other ways and they deserve just as much love and attention as our precious little ones.
With special thanks for to Tony for sharing his story.
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