Babipurian Real Life Stories: Baby Clara

Your 20 week anomaly scan is supposed to be a wonderful moment, seeing your baby’s heart beating away, little arms and legs wriggling. If you choose to you can even find out baby’s gender. For a lot of people that’s all it’s about. For some reason I was very nervous in the lead up to our scan, maybe because we’d had ivf to conceive and it had all gone so smoothly – too smoothly.

The sonographer started the usual checks and everything looked good, I even said ‘I was nervous but at least everything looks good so far, phew!’ Afterwards the sonographer said that was the moment that she realised our baby had an issue. The texture of baby’s lungs didn’t look quite ‘right’ and the heart wasn’t where she would expect to see it. She went to find a colleague for a second opinion. They muttered to each other as they looked again, and I heard the word ‘diaphragm’ mentioned for the first time. The sonographer told us that there was definitely something wrong with the baby’s lungs, and maybe her heart, but they would need to ask a consultant to see it. Oh, and congratulations, we were having another girl.

We were taken to a separate room rather than sending us back into the waiting room of excited expectant parents, and they gave us a copy of our scan image for free.

The consultant came in after a long half an hour and told us that our baby was likely to have a congenital diaphragmatic hernia, it could ‘just’ be a lung condition but further investigation would be needed. We were to be referred to the fetal medicine department at another hospital the next day.

We went home feeling numb, and I did what anyone would do – I googled it. Congenital diaphragmatic hernia (CDH) is a birth defect affecting 1 in 2500 births, where the baby’s diaphragm doesn’t form properly leaving a gap in the muscle that separates the chest from the abdominal cavity. This means that the baby’s abdominal organs move into the chest and prevent the lungs from growing properly and pushing the heart across. The condition has a 50% survival rate. The baby would need immediate intervention at birth, and she would probably also have pulmonary hypertension to resolve before they could operate to repair the hernia.

The next day the scan was inconclusive, the consultant was pretty sure it was CDH but couldn’t be certain. He asked us whether we wanted to continue the pregnancy, which was completely devastating. We already had a toddler at home, and all I could think about was how this was effect her – we knew that CDH would mean lots of time in hospital and even the chance that we would have to explain to her one day that her baby sister hasn’t made it. But I was already 21 weeks pregnant, and I could feel her wriggling and kicking away. There was no choice – we had to give her a chance.

Her heart was looked at in detail at great ormond street (it was fine) and I had an MRI with a specialist at a hospital in Sheffield. The MRI confirmed the diagnosis of CDH, finally. She had a left sided CDH and at least her bowel was in her chest cavity.

It’s a funny situation, knowing that your baby will go to nicu at birth, before she’s even born. We were able to talk to the neonatologist and surgeon, and take a tour of the nicu to prepare ourselves. Most parents in there were in shock, after their baby was suddenly born prematurely or ill. We had the unique advantage that we could prepare ourselves somewhat, though nothing quite prepares you for the reality of day to day life in there.

We finally reached my 39th week and I went in to be induced. We knew that as soon as the baby was born she would be taken to nicu so that they could save her life – they didn’t want her to take a single breath on her own to protect her underdeveloped lungs, and the nicu team would be there to intubate immediately. I wouldn’t be able to hold her, or barely see her.

Unfortunately, after labouring to 10cm, her heart rate was dipping with each contraction so I had an emergency Caesarian. At one stage the theatre had more than 20 people in there. As she was born she let out a cry and was whisked away. I could hear them working on her but couldn’t see her, my partner was watching from the sidelines. According to her notes she was intubated at 1 min 49 seconds. They wheeled her past me for a brief glimpse and she was gone.

Clara was born at 9.25pm and I was taken to recovery, and to await news. The Midwife kept in touch with nicu to find out when my wife, Sharon, could go to see Clara. It wasn’t until after 3am that she was stable enough for Sharon to see her. I had to wait until gone 11am the next morning until I was strong enough to go, seeing her for the first time at over 12 hours old.

Nothing prepares you for seeing your baby attached to a ventilator and so many wires and monitors. She was on 100% oxygen and an oscillator, which made her tiny chest vibrate audibly. There were tubes and wires coming out of everywhere, even her little belly button. She was sedated and paralysed so that she couldn’t cause any further damage. We spent all the time we could at her bedside, day and night. I stayed in hospital accommodation so that I could be there if anything changed suddenly. We sat there and stared at the monitors, convincing ourselves that we knew what the numbers meant.

All the consultant could tell us was that she was doing exactly what they would expect her to do. The first few days were so critical, we still didn’t know whether she would make it. In intensive care all of the other babies were so tiny, born at 24-26 weeks gestation. One day a consultant was talking to a student and she told her that Clara was the sickest baby in the whole NICU. The other babies looked so fragile but though she looked like an average 8lb baby on the outside, inside she was a mess. Her early X-rays showed that her lung development had been hindered even more than they’d originally thought, and she only had a sliver of lung on each side.

We were able to help as much as we could as parents. We could change her nappy – a fine art through the hatches of an incubator! We could use drops of expressed breastmilk to moisten her dry lips. I started to express 8-10 times a day to establish breastfeeding for when she was ready to feed.

At 8 days old she underwent surgery to repair her CDH. Thankfully this was successful, though they also found that her bowel had malrotated and the surgeon had to recoil her bowel before closing the hernia. At 10 days old we finally got to hold her, something I never thought I’d get to do. It was only at that point that I realised I’d so prepared myself for her to not make it that I couldn’t quite believe that she had survived.

She went from strength to strength, though she had to overcome sepsis and feeding issues along the way.  I did manage to establish breastfeeding Clara, in the end she wasn’t able to feed until she was almost 3 weeks old so until then I expressed and we started tube feeds of expressed milk after her surgery and built it up from there. I’m still breastfeeding her now at almost 12 months – it took some determination but we got there! Nicu froze my milk as I expressed and when we were discharged from hospital I left with 2 massive bin bags full of frozen milk! Amazingly at 25 days old she was well enough to come home.

We’re amazed at the strength that our little fighter has shown, and we’ll never be able to thank the nicu staff enough for saving Clara’s life. She’s almost a year old now, and since leaving hospital a follow up scan has shown that her lungs have expanded beautifully, we hope that all she’ll be left with is a scar. She may have issues with feeding and growth, but that’s nothing compared to what might have been. We are part of a Facebook group for parents of CDH babies and we’ve seen other babies with a similar prognosis not make it, that’s when it really hits home just how lucky we are.

Thanks you so much to Stacey for sharing Clara’s incredible story xx