Coarctation of the Aorta: Barney’s Story

Barney’s heart condition, coarctation of the aorta, was diagnosed at Emma’s 20-week scan. Here, she shares their story:

Our 20 week scan was booked on a Friday in September 2020. We were both excited to start the weekend with finding out the gender of our baby and to buy that first blue or pink outfit.

Although the pregnancy was during COVID, we were lucky enough that both of us were allowed in for the scan, where we were given the exciting news we were expecting a baby boy, who we later named Barney. The sonographer then spent a considerable amount of time focusing on his heart and very calmly told us she wasn’t 100% happy with what she could see. She assured us it was probably a case of the position he was in, but said she would be happier if we were sent for a second opinion. This is the point the focus soon shifted and we were taken into a room with a specialist midwife to explain their plans. We were being sent to London on Monday to meet with specialist cardiologists to discuss the potential problem.

We made our way into London, grateful we were being seen so soon; however, scared that this was a potential sign this was serious and needed diagnosing quickly. Due to COVID rules, my partner Perry wasn’t even allowed in the hospital with me. I remember walking into, what felt like, a huge room with the cardiologist. She explained the scan would take about an hour and if she saw a problem she would let me know at the end and I could then call Perry up.

The hour slowly passed and then she confidently told me she had seen a problem and I could call Perry up to have a meeting. This is when we were told Barney’s heart hadn’t formed correctly and was showing a condition called coarctation of the aorta. He would need life saving open heart surgery within the first week of his life.

The remaining 19 weeks of the pregnancy were tough, however we were looked after and monitored well. We were often in London for scans (as well as weekly scans in our local hospital), blood tests and a genetics test. As my due date approached, the plan for the birth and Barney’s care after birth was put into place and an elective caesarean was agreed at 39 weeks.

I was often asked if I was excited and, although people of course meant well, this question often brought a lump to my throat. I was of course excited, I couldn’t wait to become a mum and start our new lives as a family, however Perry and I both understood the mountain we had to climb before the new life we both very much wanted could start. I remember seeing a poster about the importance of skin to skin after a baby is born and I got tearful because I knew I wouldn’t have that opportunity – Barney was going to be whisked away. At times like this I had to remind myself how fortunate we were that his heart defect had been defected before he was born and the care was being put into place.

After the caesarean being postponed multiple times (requiring us to stay in a hotel in London, which was not easy during lockdown!) Barney was delivered on the 25th January by an amazing team. Despite the build up and worry, Perry and I were over the moon, completely in love with him and for a small amount of time we forgot about his heart condition.

He was taken to intensive care. Perry went with him while I was being stitched up. Although this sounds horrendous, I just remember feeling so happy he was here. That evening Barney was brought to me by the amazing CATS (Children’s Acute Transport Service) team who had come to collect him and drive him to The Royal Brompton. I had seen him for around a minute and they understood the importance of me seeing him before he went, so they wheeled him to my bedside in what looked like a little spaceship and I got to spend 5 minutes with him and Perry.

It was then four days until I saw Barney again. Looking back, I’m not sure how I coped, but it’s true what people say – when you’re in a tough situation, something takes over and you get on with it. I was on a ward with other women who had their babies and was very conscious how strict The Royal Brompton were on COVID, so I kept myself hidden behind the curtain and focused on recovering and getting out of there.

Once I was discharged, I finally got to see Barney and hold him for the first time. He was on a ward where he had one-to-one care and I found it so tough, walking in feeling like the nurses had got to know my baby before I had.

Barney’s surgery was scheduled for the 1st February when he was seven days old. COVID rules meant that only one designated parent was allowed with a child and there could be no switching. By this stage, Perry and I had switched. It was an impossible decision to make, knowing the next time Perry would see Barney was when he left hospital to come home, it felt incredibly cruel.

I walked Barney down to theatre alone, kissed him goodbye and clutched his blanket and dummy as I made my way out of the hospital to meet Perry. We had been told stories of other heart parents going shopping to buy their child a present or walking around the Science Museum to keep busy, however because of lockdown and the constant fear of catching COVID we didn’t have many options. We got in the car and drove to Richmond Park in a desperate bid to make the hours go as quickly as possible.

After seven hours, we got the call to say Barney was out of theatre and had come through the surgery. I could then make my way to intensive care, where I met with a nurse who took me to one side and explained how hard it was going to be seeing him with his chest left open and on a ventilator. Despite the warning, nothing prepares you, and I just sobbed the moment I saw him. He was so swollen, he didn’t look like our baby.

Intensive care is a tough place to be, it was complete chaos, but very organised chaos, and I had no doubts Barney was in the best place. We were told the next 48 hours were critical and would be a case of keeping him stable and monitoring him.

The next four days were a blur, although looking back now four days doesn’t sound a lot. They were completely exhausting, physically and mentally. I was only a week post surgery, visiting Barney on my own and trying to express to give him the best start I could once he was allowed to feed. We developed our own little routine, I would visit Barney in the day while Perry stayed in our accommodation, then in the evening I would go back and we would have dinner together before I then went back to the hospital for the evening until around 10pm.

Leaving Barney every evening never got easier and, although the nurses tried their best to tell me to look after myself and rest, it was just impossible. Despite these days being the toughest yet, some huge milestones were hit: his chest was closed, he was taken off the ventilator and started to be fed via an NG tube. I found it was helpful to always ask the nurse looking after him what the plans were for the next 12 hour shift, this allowed me to break it down in my head and create smaller goals, rather than always focusing on when would Barney be allowed home.

Five days after surgery, Barney left intensive care. He had done amazingly well. I remember walking behind his cot, out the doors and saying goodbye to the nurses who had been looking after him. Saying ‘thank you’ never seemed enough. We were now on a ward with four other babies and their mums and suddenly the thought of not having the one-to-one care we had got used to, was terrifying. Although, I of course was over the moon he was out of intensive care and as intimidating as it was, the ward now felt very daunting.

Now Barney was on the ward, one parent was allowed to stay overnight, so I set up camp next to his bed with Perry remaining in the accommodation. We then worked on getting used to our new routine. I would see Perry in the evening, have a shower, eat dinner then go back to the hospital to be with Barney through the night and day. This is when I started to feel like a mum; I was able to get a little more involved with Barney’s care. Although I couldn’t pick him up because of the drains and machines, I tried to make sure he knew I was there.

Barney continued to make progress, although it often felt very slow. I had to remind myself what he had come through. I found it incredibly hard watching him go through the daily checks that made him cry and being by his side when his drains were taken out and his dressings were changed.

We then worked on trying to establish his feeding, which actually turned out to be one of the toughest parts. This sounds ridiculous after overcoming open heart surgery, but he had to tackle a mixture of a chylothorax (which meant he had to be put onto a prescribed formula), allergies, reflux and a significant tongue tie. I understand these things sound insignificant, however I never quite realised the importance of a mum wanting to be able to feed her baby until I experienced not being able to myself.

I’ll forever be grateful to the family liaison team who offered support and often a shoulder to cry on when we went through tough days. Having someone who is part of the hospital, and understands how hard it can get, was invaluable.

After two weeks on the ward, talks of Barney being able to go home started to happen, and the end came into sight. By this point, Perry had gone back to our home as the cost of the accommodation was mounting up. With no chance of him seeing Barney, we thought it was best for his own mental wellbeing to be at home with home comforts rather than being confined to a hotel room.

After what felt like slow progress and a few setbacks such as an infection in the wound, Barney started ticking off vital parts of his recovery, which meant at just under 4 weeks old, he was allowed to go home. Perry came to collect us and was finally reunited with him – a moment I’ll never forget.

I wanted to share our story because when we found out about Barney’s CHD, we took great comfort in reading other parents’ stories and it helped prepare us for what was to come. There’s no doubt about it, it’s not an easy road, and we are some of the lucky ones, however on a positive note it has put us in touch with other parents who have been a huge support. We’ll be forever grateful to Tiny Tickers for making that happen.

Barney continues to have regular appointments and support from both The Royal Brompton and our local hospital and will be required to do so for life. We were often told how strong heart babies are and Perry and I both feel so very proud to be parents to our own.

During pregnancy, Emma and Perry joined one of our parent-to-be virtual support groups. If you are a heart parent or heart parent-to-be, you can find out more and sign up for a free group and/or drop in session here.