Connie’s son, George, was born with Atrioventricular septal defect (AVSD), which was diagnosed before he was born. Here she shares their emotional story:
(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)
My little boy was born in April 2024. He was born with a congenital heart defect called Atrioventricular septal defect (AVSD); he had three holes in his heart.
We were lucky enough to find out about this at our 20 week scan, after which we were very quickly referred to Birmingham Children’s Hospital for them to confirm the diagnosis.
It was quickly brought to our attention that he definitely did have AVSD and that he would require surgery within the first year of his life. I do find it a blessing that we knew very quickly, as we then gained a lot more support throughout the pregnancy and had multiple scans and check ups.
We did of course feel completely heartbroken that this was happening to our baby. We would always say “Why him?! He hasn’t even arrived in this world yet and he already has a lot to face!”
There were moments where I thought and worried myself to death. What if he didn’t make it, what if he needed lots of tubes and wires around him when he was born, how would I face that? I can’t even explain the feelings and worries I experienced.
He needed to be delivered as close to his due date as possible. He was born at 39+1 weeks by c-section, as this was the safest option for him.
Little did we know that when our precious little boy was born, he would need to be rushed off to NICU because his oxygen was dropping. That moment was gut wrenching and heart-breaking. I just wanted to hold and be with my baby but I couldn’t; I couldn’t move. He was rushed off and I had to trust the doctors and nurses to help him and make sure he was okay.
I finally got to meet my beautiful boy. He spent just two days in NICU and a week in total in hospital before he was able to go home, but unfortunately that time at home was cut very short.
After being at home for just four days, my little boy started to show signs of early heart failure: not feeding, not waking for feeds, struggling with his breathing, head bobbing, sweating and blueness. I couldn’t believe how quickly this had escalated when we were told it could take some weeks. Knowing all of this of course made me extremely worried about him and I would obsessively watch over him all the time.
My baby then spent another week in hospital and had to be tube fed. He tired very quickly from using a bottle; his little body was exhausted. He also took various diuretic medications.
A few months, and what felt like a million appointments, went by and the day came for my boy to have his open heart surgery. He was just four months old. The emotions, fears and anxieties I felt leading up to that moment were horrendous. The closer the surgery got, the more I cried. I was completely terrified!
Six hours later, with two hours on a bypass machine, my boy made it through his surgery. He spent just two days in PICU and spent three weeks in Birmingham Children’s Hospital, who were absolutely amazing. They looked after my boy like a king and I cannot thank them enough for saving him!
He does still have leaky valves and visits Birmingham often for follow up appointments, but he looks healthier and happier and I couldn’t be prouder.
Unfortunately, my boy has gone on to have other health conditions, which were picked up after he was born, but besides all of that, he is the bravest, most beautiful, cheeky, happy, sweetest little boy I know. I’m so proud to call him my hero and to be his Mummy.
We don’t know what the future holds for my boy, but I am enjoying every second of it!
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