Atrioventricular Septal Defects: Eliott’s Story

Kim’s son, Eliott, was diagnosed with Atrioventricular Septal Defects (AVSD) during her 20 week scan. Here she tells their story, from diagnosis to awaiting open heart surgery:

‘I remember how excited we both were when we found out I was pregnant after tying so hard for so many years. My pregnancy was going really well until I had my 20 week scan.

The 20 Week Scan

The sonographer asked me to lay on both sides and said our baby boy was laying in a difficult position, so he couldn’t see everything he needed to. He then sent us for a walk and tried scanning us again. At that point, he asked for a colleague to come in to have a look. Immediately, I knew something was wrong.

The sonographer then said, ‘there’s something wrong with your baby’s heart.’ The emotions I felt were overwhelming as we were asked to wait outside while he made a phone call. Our sonographer came back and told us we had to go to Great Ormond Street for a specialist scan to look at our baby’s heart. We had an emergency appointment for the very next day.

That day and night was the the worst time of my life. What might be wrong with the tiny baby boy we’d tried so hard for?

That next morning, we headed to London to GOSH hospital where we sat and waited for our scan. There we met two sonographers whom consulted each other whilst scanning me. Once finished, they asked me and my partner if we’d take a seat in the room next door. This is when I knew something was very wrong. We were greeted by another lady, a specialist cardiologist nurse. She began showing us images of our baby’s heart and explained he had a heart defect called AVSD.

Atrioventricular Septal Defects (AVSD)

He had a hole in top two and bottom two chambers of the heart and two valves which look slightly joined. I sat in silence taking it all in – asking no questions and trying to get my head round the fact that our unborn baby’s heart hadn’t developed how it should have. All I remember next is hearing the words, “ he’ll need open heart surgery.”

The only chance our baby had was to be operated on. Not knowing what might happen was terrifying. We then headed off home and sat in silence reading through leaflets and searching the internet, trying to understand more.

The rest of my pregnancy was such a terrifying time. I had more regular check ups and tried my best to keep positive. I hoped our baby would wait his arrival for us to give him the best chance of survival.

We visited GOSH once again, to be told his heart was the same. Unfortunately, the hole at the bottom, which they hoped might close, was still there. We were sent off again, this time with leaflets about where our baby would be staying when he has his operation and more information.

As we prepared for the birth of our baby, the chances of him being in intensive care were high.

Safe Arrival

Our baby boy made his safe arrival two weeks late and was born healthy and happy. The next 24 hours were amazing, it was precious time we got to spend with our baby. Then the next day he had a SATS test. We were then told his oxygen levels were too low and he needed to go straight to NICU.

They worked away on him while we sat patiently, waiting to go down and see him. We walked in to find our tiny baby boy hooked up to machines.  I felt like time had stopped. Every emotion possible was running through my mind.

We stayed by his side day and night, trying to get rest when we could. Every day, we hoped for more good news from the doctors. Eventually, after five days he was weaned off oxygen and we were allowed to finally take our baby boy home. I was even more nervous knowing I had no one with me to check on him and we had to rely on ourselves.

Our baby boy, Eliott, has now gone three weeks without oxygen. When he met with the GOSH consultant, he told us how well he was doing with 92-95 oxygen levels, which was amazing.

We’re now waiting for him to have open heart surgery, where they will patch up his heart and hope for a good outcome.

Our journey has only just started and we’re so proud of how strong our boy is.’

Find out more about different types of congenital heart defects here.