Coarctation of the Aorta: Finn’s Story

Jessica’s baby boy, Finn, was diagnosed with Coarctation of the Aorta and a VSD before he was born. Jessica will always be grateful for the sonographer who spotted something was wrong with Finn’s heart at her 20 week scan. This is their story:

After over a year of trying for a baby, my husband, Craig, and I were delighted to find out we were finally pregnant. We couldn’t wait to tell our close family, so we booked a private early ultrasound and left feeling elated when the sonographer confirmed we were eight weeks pregnant and we got to hear the heartbeat. Still early days, we waited until after the twelve-week scan to tell friends and work colleagues. Everything was looking good and the checkups couldn’t have gone any better. I started to really enjoy my pregnancy and quickly bonded with my bump, all of which was made easier by the fact I had none of the ‘typically terrible’ pregnancy symptoms such as morning sickness.

The twenty-week scan was fast approaching and the only concern we had was whether or not to find out the sex of our baby (we decided we preferred the surprise element, especially as this was our first child). Although, like all expectant mothers, I received the usual paperwork explaining the purpose of the scan, to look at the baby’s physical development, I felt confident and very excited as we arrived at the hospital to attend that appointment – why wouldn’t I? I was considered low risk, had no family history of any scary pregnancy stories or childhood conditions and we didn’t know a single person who hadn’t left the same milestone appointment with a big grin on their face, anticipating that the next time they would see their baby would be at the birth.

The sonographer was calm, friendly and professional. She talked us through every stage explaining what the different blobs on the screen were in great detail. This is the reason I knew something was very wrong when she scanned the heart. She was still just as lovely, but something had changed; her language was more vague and, after scanning me in every possible position, she finally said she wanted to get a second opinion. When she left the room, I sobbed uncontrollably. I had never experienced pain like that. In my gut, I knew we were not going to leave with good news – this wasn’t the experience I had seen played out so many times on the television and I had to accept that.

The sonographer had noticed a ventricular septal defect (VSD), a large hole in the heart, and that wasn’t all. The heart didn’t seem to be forming as expected and we needed to be referred to a heart specialist. We were taken to a quiet room where all our scan measurements and images were printed for the consultant to talk us through in more detail. We were told this wasn’t something they saw often and they were unable to make a diagnosis then and there. We were told to prepare for the worst but hope for the best, as the team in Birmingham deal with complex heart conditions all the time. We were told not to use ‘Dr. Google’ but instead were recommended to research through reliable sources such as Tiny Tickers and read other people’s stories.

I cannot begin to tell you how much this helped.

After weeks of rain, the weather was glorious that weekend. I hoped it was a good omen. Sitting on the beach, we spent so many hours reading the experiences of so many families who’s world had been rocked just like ours at the twenty-week scan. And although their paths had changed, time after time, we were reading good outcomes. Yes, babies and children often had to go through surgery or learn to cope with medication first but, we could see, with early detection, there could be light at the end of the tunnel.

We sat on that beach and watched families playing together, looking so care-free but not knowing any of their individual circumstances. Any of those could have gone through this and we wouldn’t know. After all, we learned it was far more common than we realised, with 1 in every 125 babies born with a heart defect. Why didn’t I know this I kept thinking? I must have visited the Tiny Tickers website hundreds of times that weekend. Before our appointment, and during our agonising wait, I took great comfort in the words of other parents and that is why I feel it’s only right to share our story.

The appointment came, and although petrified, I felt strangely relaxed and confident that we were now in the right hands. After reading some stories online, I also felt (to so many people’s surprise) so very lucky because we were now getting the best care and answers. I must have been scanned at every angle for nearly an hour. The cardiologist and fetal medical team were amazing and so reassuring. They explained as much as they could during the scan but took at least another hour after, alongside a specialist midwife, to talk us through what they could see and our options. We were told that the left aortic arch was narrow and didn’t appear to be growing as it should (on top of the VSDs which we already knew about). I still couldn’t believe they could see all this in such detail as I was only just over halfway through my pregnancy and could only imagine how tiny my baby’s heart was. Due to this, they were unable to be specific, but we at least knew our baby would almost definitely require some sort of surgery for the coarctation of the aorta. It was still possible multiple surgeries would be needed if the left side didn’t continue to grow, known as hypoplastic left heart syndrome.

While all this sounds terrifying to people who have never come across these terms, we had. We had read all about them on the Tiny Tickers website. We had some understanding and this allowed us to think clearly about our options, to ask important questions and get our head around the statistics. Now we had an idea, we were able to also prepare our families. This was surprisingly harder for us to explain than to hear. We could see how hearing the news without any preparation would have been much harder judging by their reactions and questions.

Because our baby’s heart defect had been detected, all our care was transferred to Birmingham Women and Children’s Hospital and we had more frequent and specialist appointments. The relief in knowing this helped to keep my stress levels down. With each appointment, we found out more and were able to plan the birth with the knowledge our baby would require assistance with breathing, medication and ultimately surgery of some sort. When the time came, I was induced at 39 weeks and our beautiful baby boy was delivered naturally on 31st July 2019. I had a very quick cuddle before he was whisked off to the neonatal unit for his condition to be monitored and put on life saving medication. Whilst we were prepared for this, it was still extremely difficult, but we knew that he would not be here without this support.

After a few hours of rest, I was wheeled down to meet him properly. He was so alert and looked so perfect despite all the tubes, beeps and lifesaving equipment surrounding him. As part of our preparation during pregnancy, we were given tours of the neonatal unit and shown images of the equipment Finn would be hooked up to. We knew this would be all part of our journey. Without sounding like I’m repeating myself, that is thanks to Tiny Tickers. And when the time came for him to be transferred to the heart ward at the Children’s Hospital, we weren’t scared but instead we were relieved as it was another step closer to getting our boy home. Knowing our way around, recognising friendly faces and knowing the next stages of our journey made it all so much more bearable.

It was at Birmingham Children’s Hospital where Finn had an echocardiogram for his official diagnosis; confirmed Coarctation of the Aorta. We knew exactly what that meant and what was coming next. He needed open heart surgery to repair his aortic arch.

At just ten days old, we did the dreaded walk to theatre. Carrying my beautiful, tiny baby boy in my arms, I handed him over to the surgical team. I am not going to play down how unbelievably hard and surreal that was. We held his hand and stroked his head as he went to sleep. It would be another 6 or 7 hours before we would see him again. I thought they would be the longest hours of my life, and, although by far the toughest, we were prepared for this.

We had decided not to stay at the hospital and instead head into town. Our heads were all over the place and I felt completely numb inside but we had a plan and were sticking to it. We trawled the shops looking for a bear and a special outfit; the outfit he would be coming home in. It gave us a sense of purpose and something to pass the hours. Before we knew it, we had the call we were waiting for. Finn was out of surgery and back in intensive care – all had gone well. I didn’t take much in of what was said after that. I just started to run. I had to see him.

When we arrived at intensive care, the setting was again familiar. We were greeted by the kindest nurse who we still refer to as our Mary Poppins. She talked us through Finn’s current state and explained all the drips and IVs. I still remember saying to Craig, “Look he’s breathing normally. That’s what it’s meant to look like.” Finn is our first baby and we had got so used to his inconsistent deep breaths followed by quick puffs. His breathing was that bad before the surgery that the hospital university asked to record him as part of a training video for new nurses and midwives. Now he was breathing like a pro. His chest was left open for the swelling to reduce and we were told to expect Finn to stay in PICU for up to a week.

But Finn is strong and within a matter of hours, he had opened his eyes and was moving his arms. He was monitored overnight and, because he was doing so well, the next morning all his lines were removed and the only pain relief he received was paracetamol! We couldn’t believe it! He’d just gone through major heart surgery.

After his chest was closed, he was taken back up to the heart ward where he went from strength to strength. He was finally allowed to feed, and we could pick him up without all the wires attached to him. As he began to gain weight, our dream of finally going home was starting to feel like a reality. Those last few days were bittersweet for my husband and I. We had made it. We had been through the worst and had our own story to tell in the shape of a beautiful, healthy baby boy. But each day we were closer to going home, we were reminded of the pain and worry that can come with having a baby born with a congenital heart defect. Especially when the heart defect is undetected.

Exactly a week after Finn’s surgery, a family were rushed in and their baby boy was taken for emergency surgery. His diagnosis was the same as Finn’s but it came days after his birth. This family were previously on cloud nine, living in a blissful bubble when that reality was ripped from underneath them. We couldn’t begin to comprehend how, despite the similarities between our situation at the time, our experiences could be so different. Their little boy, like ours, came back up to the ward doing very well just as we were leaving. The relief was huge. As a heart parent, you will always be taken right back through that emotional roller coaster when you see or hear of other heart heroes.

Maybe ignorance is bliss. Not knowing what is around the corner can sometimes be more mindful; living in the here and now. But not for me and not for others in this situation. Knowledge is power. If we hadn’t known about Finn’s heart condition we may not have been so lucky. And that’s exactly what we are – incredibly lucky. Incredibly lucky for the training funded by charities such as Tiny Tickers. Incredibly lucky for the skills, compassion and commitment of the NHS staff. Incredibly lucky for the families who share their stories to help lighten the load just a little, to know we are not alone and although every single heart baby is different, we will always have some kind of shared understanding.

Finn will always be a heart baby. He will require continued monitoring throughout his lifetime. But he is now a healthy, thriving eight-month-old. He never stops smiling and has the cheekiest laugh. He has already made such a difference to so many – our family call him our miracle baby – and now, by sharing his story, we hope he can make a difference to so many more.

Thank you, Tiny Tickers.

Find out more about Coarctation of the Aorta here.