Tag Archives: Baby Loss

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

Baby Loss Awareness Week – #BreakTheSilence

Each year the 9-15 October is Baby Loss Awareness Week, a time to remember all the babies who died during pregnancy, at, during or after birth. The week provides an opportunity for people to talk openly about baby loss, a subject that for many still remains a taboo, and helps to raise awareness of loss during or after pregnancy.

The Smallest Things, supporting Baby Loss Awareness Week, will be sharing stories, pictures and the words of bereaved parents; remembering all babies gone too soon, offering hope to others and celebrating short lives.

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We will be taking part in a global ‘Wave of Light’ at the end of the week and ask you to join with us, and thousands of other families across the world, to light a candle at 7pm and leave it burning for at least one hour – Saturday 15 October.

You can be part of a digital “Wave of Light” too. Simply take a photo of your candle burning brightly and post it to social media sites such as Facebook, Instagram or Twitter at 7pm using the hashtag #WaveOfLight.

Together, and across the world, we will remember them; brothers, sisters, daughters, sons  – babies who have died too soon.

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http://www.uk-sands.org

http://www.miscarriageassociation.org.uk

http://www.tommys.org/baby-loss-awareness-week-2016

http://www.bliss.org.uk/News/baby-loss-awareness-week-2016

 

Eva & Charlotte’s story

GetAttachmentOn Monday 30th November at our Westminster Reception, Sarah Miles, mum to Eva and Charlotte, spoke bravely about their journey through neonatal care. Her words were powerful and moving and captured the reasons why parents of babies born too soon need more time.

Sarah shares her words with us here….

The Smallest Things reception – Eva & Charlotte’s story

“Hello. I’m here as a supporter of the campaign to extend maternity leave and as a mum. And probably the best way to explain why I’m supporting this campaign is to tell you the story of two VERY little girls.

In 2011 I found out I was pregnant. It wasn’t a surprise because, like most things in my life, it was carefully planned. Working in the media there’s not a great deal of job security and I’d strategically manoeuvred myself into a permanent role after years of freelancing in order to get some paid maternity leave and – most importantly for me – a job to return to.

Yet life doesn’t always follow your best-laid plans, as many of us in this room can attest. At our 12-week scan we were speechless yet delighted to find out we were expecting identical twins. And, with the benefit of hindsight, naive to all the issues this can bring. We were scanned fortnightly and at 22 weeks were told I had too much amniotic fluid. At 25 weeks I had bleeding and was admitted for 10 days’ observation. At 28 weeks, the day before I was due to have amnio drainage and 12 weeks early, my waters broke and I gave birth to two beautiful girls by emergency c-section. Eva weighed 980g (2lb 2oz) and Charlotte tipped the scales at 1.1kg (2lb 8oz). They cried as they emerged – a good sign – but neither could breathe by themselves, let alone feed orally, maintain their own body temperatures or fight off infection and they were resuscitated before being whisked away in incubators to the neonatal unit seconds after delivery.

And so began our adventure through NICU. While in recovery, we were told that Eva had a condition called TOF/OA – trachea-oesophageal fistula/oesophageal atresia – which basically meant her mouth wasn’t connected to her stomach and she couldn’t swallow. Suddenly my excess amniotic fluid made sense. And life-threateningly, her oesophagus was connected to her trachea so fluid could enter her lungs. She was transferred from Queen Charlotte’s Hospital in Hammersmith to Chelsea & Westminster Hospital for immediate surgery, while I stayed behind with Charlotte in NICU for five excruciating days. Eva was given a 50/50 chance of surviving the operation.  That was the first – and certainly not the last – time I begged, pleaded and bargained with the universe to let her survive. There’s a lot of that in neonatal units: willing, wishing and wanting your baby to make it, yet having no power to affect the outcome. It’s torturous.

But she made it. And on day 5 Charlotte was transferred to the same hospital – but never the same ward – to make our lives just about bearable. Expressing eight times a day, reading medical papers, hanging around in corridors for separate ward rounds (and hoping the two didn’t coincide), sitting by incubators, watching numbers on screens, reading obs charts, listening to bleeping machinery….. all this quickly became our normal daily routine. Learning to change a nappy through the portholes of an incubator, gingerly holding twig-like legs up without disturbing wires…. we learnt how to do our babies’ “cares” in a way that was far from normal. It was two weeks before I could have my first precious cuddle with Eva, and even then I was terrified and spent the whole time staring at the numbers on the monitor. How could this tiny baby the size of her daddy’s hand survive and grow?

Sarah Miles

Within a week my partner was back at work and this new routine was one I did alone. Dashing between intensive care, high-dependency and the expressing room – experiencing the highs of a wonderful cuddles and the lows of infections, blood transfusions, cannulas and backwards steps to ventilation. For most new mums, the sound of their baby crying is cause for concern, for NICU mums it’s a sign of positivity – growing lungs, healthy reactions.  With your baby in a plastic box, or as somebody wonderfully called it “a womb with a view”, you’re denied the simple pleasures of new parenthood. Picking your baby up, changing their nappy, feeding them when they’re hungry – all of these things are done to a schedule dictated by a doctor and implemented by a nurse who you have to ask permission from. You’re robbed of those precious new first experiences while in a constant state of fear your baby might die. I was desperate to hold my girls but terrified it might hurt them or cause distress.  ‘It doesn’t matter,’ you tell yourself, ‘As long as they get better and grow. They’ll come home and then we will start properly. Like it should have been. This is just a nightmare to get through and then we can start again at the beginning.’

When Charlotte and Eva were allowed to start wearing clothes, it was another baby step towards ‘normality’. Us NICU mums crave normality – we’d roll our eyes and hold our noses at explosive pooey nappies and yet ANOTHER outfit change yet inwardly delight and revel in it. This is what normal newborns do! We’re getting closer. And when Charlotte was moved from an incubator to an open cot I was literally walking on air. ‘You mean I can just lean over and touch her? Without asking?’  While in the next room Eva was being put on yet more antibiotics for a suspected bowel infection and I wasn’t allowed to touch her because she was too unstable. Being told you can’t touch your baby is one of the worst things you can say to a parent. But of course you want what’s best, and if that means depriving yourself of bonding hugs, then so be it.

It was the nurses and other mums on the unit that got me through the day-to-day of NICU life. We called Eva and Charlotte’s nurses her ‘aunties’ (as none of their real aunties were able to visit) and the friendships I made with the other mums will last a lifetime. We supported each other through bad times and celebrated the good times – the baby steps forwards – and when it was finally time for a baby to go home we would all celebrate. While NCT groups up and down the country are meeting for coffee and talking about pooing and breastfeeding, NICU mums gather in expressing rooms to discuss breathing support, surgery and methods of tube-feeding. It’s like an alternative reality where life-or-death moments are discussed in the same way as nap routines. Put simply: normal mums worry about their baby sleeping through the night, NICU mums worry about their baby surviving the night.

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After 79 long days, 5 days before my due date, Charlotte finally came home, weighing 2.6kg (5lbs 5oz) and behaving pretty much like a newborn. But at the same time Eva was struggling to recover from a failed operation to fix her oesophagus. Ecstasy and agony simultaneously. Despite having one daughter at home my life got harder, rather than easier because infection policy dictated that I couldn’t bring Charlotte back onto the unit. So I was forced to leave my fragile ‘newborn’ baby every day, who I had worked so hard to breastfeed, to visit my arguably more fragile baby in hospital. It was unbearable. I hired a nanny to look after Charlotte, my mum helped out and my partner Dave swapped his working Friday for a working Saturday so that friends could take over. Dave took one week of paternity leave when Charlotte came home and one week of holiday. Because we had to divide ourselves between home and hospital we rarely saw each other and when we did we were too exhausted to communicate. There were no shared joys of our new babies – just handovers of information.

Eva needed to reach a certain weight before they’d operate again so we were in it for the long-haul. But she was thriving and her smile when I arrived every day made it all worthwhile. She loved watching the jungle animals rotate on her mobile and listening to music from toys. Along with the nurses we devised a daily routine that included sitting up in her bouncy chair watching what was going on.

In total Eva was in hospital for 197 days before she came home to die, having suffered brain damage during her final operation. She died on 23 February, Day 201, aged six and a half months. Her hospital stay had been one day longer than my pregnancy.

I don’t have the words to describe the time that followed, apart from to say that Charlotte gave me a reason to keep going. She was, and still is, my salvation.

Three and a bit months later my boss took me out for dinner and asked if I was planning to return in August, when my year’s maternity was up. I’d had six weeks of 90percent pay and then statutory pay until nine months. I knew I wasn’t emotionally ready so I asked for more time – unpaid leave – but they said no and sent me a letter to sign saying I was resigning. As I signed that letter part of me knew that I was signing away the career I’d spent 15 years working hard to build up.

A couple of months later my partner Dave was made redundant. We knew we were going to have to do some significant belt-tightening to live on one salary but to live on nothing? So I accepted a month’s project work at my old company for around £20K per year less than the job I’d just resigned from. Thankfully he found another job and I didn’t stay on. When Charlotte was 18 months old I started doing a little bit of self-employed freelance work from home while she went to nursery two mornings a week. Well I say, every week but I’d guess she was off about half the time with chest infections so I wasn’t able to commit to much work.

Fast forward through my second pregnancy (which I wish I could) – this time a full-term healthy girl called Iris – and self-employed mat leave to today, and I’m still sporadically freelancing from home, which doesn’t really work with childcare commitments and school runs. So I’m looking for a part-time permanent job but having no luck. Part-time editors are few and far between, and often are only those that have negotiated hours when they returned from maternity leave. Something I was very aware of before I got pregnant. But as I said before, the best-laid plans don’t always pan out…

If I’d have had more time after Charlotte came home and Eva died, I might have felt strong enough to negotiate a return to work on my terms and not be in this position four years later. But because I felt I had no choice but to resign, here I am. And while we’re by no means queuing at the food bank just yet, it has had a huge effect on our family and so far has prevented us from buying our first home together.

Time spent in NICU is simply not maternity leave. It’s a nightmarish version of ‘what should have been’ where doctors are trying to replicate the conditions of your womb because your baby or babies should still be in there. Every year, we celebrate Charlotte’s Homecoming Day – 79 days after my twins were born and five days before they were due, because this is the day she truly became ‘ours’. The first day we looked after her independently, the first day she slept in her own moses basket, the first day she was breastfed on our sofa, the first day her nappy was changed on her changing mat. It was, in many ways, the day she was born. Yet it was three months after my maternity leave had started and three months before her sister would leave the hospital.  And that’s simply not fair.”

 

If like Sarah you believe that familes of babies born too soon need more time, please do sign our PETITION to extend parental leave for parents of premature babies – SIGN NOW!

The option for compassionate end-of-life care

Shared as part of our communication in Neonatal Care Week | 23rd February – 1st March 2015.

Communication matters, not only in the present but upon the lasting effect it has on the future as we look back, reflect and remember.
NICU is a world far removed from any parent’s dream of greeting their new baby, a world where the most difficult of difficult decisions take place.
How bad news is imparted and difficult decisions reached are integral not only to a parents lasting memories, but also for parents to know that the best or perhaps only decision possible has been reached.
In her piece Hugo’s mum Leigh talks about the need not only for honesty, but for health care professionals to consider carefully the language and vocabulary that they use when delivering bad news.

Headspace Perspective

This post, When All Options Have Been Exhausted, from Still Standing magazine has been on my mind since I read it a couple of days ago.

The post describes one bereaved mother’s experience of the end-of-life care for her baby son. She says that knowing the doctors were out of options for saving her son’s life has helped her in her grieving. The post also makes the excellent point about the importance of the distinction between saying “There is nothing more that can be done” – that is, in a medical sense: there are usually things that can be done in terms of giving someone a compassionate, calm death.

I nodded along to the post – so much of it was resonant and reminded me of the day that Hugo died. The post reinforces the need for honesty, and the consideration for appropriate vocabulary when delivering bad news.

Hugo died aged 35…

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All I want for Christmas – Is for Christmas to be over

Blog post by Leigh Kendall

I’m not looking forward to Christmas. In fact, I’m looking forward to December 25 coming and going.
HugoIt’s not because I’m a miserable humbug. It’s because my baby son Hugo died earlier this year.

Last Christmas, I was pregnant with our first baby. My partner and I thought it would be our last ‘quiet’ Christmas together – this year, we thought we would be deluged by presents for the baby, and by visits from family. Our baby was due in June, so would just be starting weaning – we wondered what the baby would like to eat, and what would make them screw up their face in disgust (we didn’t know the baby’s gender then).

It all went wrong in late February. My midwife sent me to my local hospital, where I was diagnosed with the rare, life-threatening pregnancy complications pre-eclampsia and HELLP syndrome. I was just 24 weeks pregnant. I was sent to a specialist hospital two hours away because I was so sick and my unborn baby so premature – Hugo was born by emergency Caesarean section the day after I arrived.

My feisty little baby fought so hard for 35 days. Sadly, Hugo was too small, and premature, with underdeveloped lungs. He died in my arms.

The grief and heartbreak at losing my precious, much-wanted and much-loved baby is indescribable. Christmas is an extra torment: cute little Christmas baby outfits in the shops that I should be buying for Hugo; the Christmas adverts on the TV that promote happy families celebrating together; the lyrics of Christmas songs that now have a painful resonance (“Baby all I want for Christmas is you” in particular). All of these rub salt in to the wound.

It doesn’t matter how many more children we are able to have in the future, Christmas will never be the celebration it should be. Hugo will always be missing. He will never write a Christmas list, go to see Father Christmas, be in a nativity play, or open presents. We will never see his little face light up at the sight of decorations, or chuckle when he screws up his face in disgust at Brussels sprouts. All normal things that so many other parents take for granted.

If you know someone who has lost a baby or child, spare an extra thought for them at Christmas. Make sure you mention their name in cards – they are still a part of their family. Please don’t worry that including the baby’s name will upset them – it’s actually not acknowledging that can cause upset. Understand that the parents might not be enthusiastic about parties and other celebrations. Try not to encourage them to go to ‘help cheer them up’ – however well-meant, recovery from grief is far from that easy.

This Christmas, and every Christmas, my own little star, Hugo, will be missing. Christmas will never be joyful for me again.

You can find out more about Hugo’s Legacy and the work Leigh is doing to raise awareness at – http://headspace-perspective.com/hugos-legacy/

Little Lights: A time to remember

Yesterday we took our two boys, born 3image0 weeks and 34 weeks to fundraise on the Bliss Little Lights Walk. It was beautiful and moving – you can’t really beat a candle lit walk around Tower Bridge for a location!

imageSigning up for the walk our plan was to raise money for a fantastic charity whose volunteers had supported me after we came home from hospital, and to remember our own journey and just how special our two boys are.

Rather than reflecting on our own journey though, I found that my thoughts were instead with the families who’s babies our no longer with us… and then watching our own boys that old familiar feeling of guilt kicks in; the guilt you felt in NICU when you thought you were at your lowest, only to speak with another mother whose baby was facing a much tougher time than yours. The guilt you had when you felt empty and as if you’d lost your baby, when you know that other mothers have lost theirs. And the guilt you felt when grieving for the lost time with your baby, that lost final trimester and the lost time to hold your new born, when you know that unlike some families you will eventually bring your baby home.

A journey through neonatal care is often fraught with conflicting emotions and it seems these emotions aren’t left behind when you leave the unit. Parents of babies born too soon have been sharing with us the three words which best describe their journey through NICU; loss, guilt and lucky are words that come up time and time again and are perhaps three words that best sum up the emotions of Little Lights Walk for me.

Brushing aside the guilt and embracing the emotions, you learn to live with them as an ex-prem mum, I enjoyed watching our two boys both still too young to understand what it is all about and felt so proud of all they have achieved; but as I watched the light reflect on the river I took some quiet time for my thoughts to be with the families whose babies did not come home from hospital and who remain loved in our hearts. We had a candle burning brightly just for them and they will all be remembered on World Prematurity Day.

Hugo’s Story

Blog post by Leigh Kendall

Hugo 1My beautiful son Hugo was born 16 weeks prematurely – to prevent us both dying.

My partner Martin and I had tried to conceive for two years, and we were excited when we discovered I was pregnant. Everything went well for the first 23 weeks, and I was so proud of my growing bump. I thought it was just a matter for 40 weeks to come along.

At 23 weeks I started feeling unwell, but put it down to general pregnancy discomforts. My midwife was concerned about my symptoms and sent me to my local hospital, where I was diagnosed with severe pre-eclampsia and HELLP syndrome. The only cure is to deliver the baby – otherwise, both mother and baby will die.

I was so sick and my baby so premature I was transferred to a specialist hospital two hours away from home. Hugo was born on February 20 2014 when I was just 24 weeks and 4 days’ pregnant, and weighing just 420 grams.

I had to wait for about 30 hours to meet him because I was recovering in intensive care. Hugo’s doctors and nurses were struggling to increase his declining blood pressure – which magically restored itself the moment I arrived at his incubator. The nurse caring for Hugo said she would never forget that moment.

Hugo was so full of character. He would get cross when he had a wet nappy, wriggle out of his arm guards, and stick out his tongue to defy the suction tube. His nurses were fond of him, nicknaming him ‘Hugo Boss’. We spent hours talking, singing, reading and gently holding Hugo in his incubator. He recognised my voice, and my talking and singing to him were able to calm him when he was distressed.

Hugo IIIHugo loved my breast milk – it would all be guzzled up. Our cuddles with Hugo were amazing. Hugo was notorious for playing up when handled, but settled happily into calm skin-to-skin cuddles with both his mummy and daddy. Hugo would trace my skin with his hand and boogie as I sang to him. He would also pull his dad’s chest hair.

He needed to be ventilated to help him breathe, but ironically the ventilator was also damaging his lungs. Hugo developed chronic lung disease. It felt so frustrating, as everything else seemed to be going well for Hugo.

Hugo really started to struggle. We were told his lungs were so damaged, he was unlikely ever to recover. He was on 100 per cent oxygen, and the pressures were those an adult would be on.

He was started on a course of steroids. We knew that they were his last chance, and that they are ineffective on some babies.  He initially responded really well; within the first 36 hours, his oxygen and pressures dramatically reduced. We dared to hope that we would eventually be able to take our boy home. However, when the steroid dose reduced, so did its effectiveness. His oxygen needs increased again, as did his pressures.

On Thursday March 27, my world fell apart. The consultants recommended Hugo’s treatment be withdrawn. There was no chance that his lungs would ever recover. It would be cruel to keep Hugo alive, and it would be cruel for us to live in false hope.

Hugo IIWe had a long conversation with the consultants. There was a strong temptation to wait so we could spend more time with him, and hope for a miracle. We were also aware that there was a chance that the decision could be taken out of our hands, as Hugo was very poorly.

We went into a separate room to have our final cuddles in privacy. Martin had a skin-to-skin cuddle with Hugo first. I then cuddled Hugo, singing his favourite nursery rhymes and telling him how much I loved him, that he was the best baby any mummy could have wished for, and how proud I was of him for fighting so hard. I also told him those five weeks had been the best of my life, full of joy and happiness with my special champion boy.

Hugo died peacefully in my arms. We were in shock. He had fought so hard for 35 days, and now the baby we had so wanted and loved so much was gone.

I cuddled Hugo. It was lovely to see his face properly without his hat, naso-gastric and ventilator tubes.

More than 60 people attended Hugo’s funeral. The number of people who took the time to help celebrate Hugo’s life demonstrates how deeply he touched everyone who followed his story. Hugo’s name means ‘bright in mind and spirit’, and he certainly lived up to it.

I have set up an organisation in Hugo’s memory called Bright in Mind and Spirit, which is focused on improving healthcare communication and support for families in a similar situation.

I work in NHS communications. While most of my experiences have been excellent, there are incidences where issues could have been avoided and stresses reduced if there had been better communication between health professionals, and between health professionals and me. So, I would like to use both my professional and personal experience to make improvements where necessary.

Good communication costs nothing, but can create a world of difference to a patient’s experience.

My focus at the moment is on the following:

  • Improve communication and information for parents whose baby is in a neonatal unit;
  • Improve information and signposting for women who have suffered a traumatic end to their pregnancy;
  • Improve information and signposting for parents whose baby or child has died.Hugo 2

The changes that are needed are often simple, but they can help make the worst times of our lives feel just a little bit easier by knowing what to expect, what to do, and who to turn to for help. The information needs to be produced in a way that is in plain language and easy to digest.

I am pleased to have contributed to some improvements already, at the hospital where Hugo was cared for. It is a small comfort to know that my special boy lives on through this work.