Stephanie Lewis knew her baby boy would need heart surgery before he was even born. At her 20 week scan the mother of two from Cardiff found out that her unborn child had an abnormality in his heart, but she didn’t find out what it was until she was referred to a foetal cardiologist who confirmed that it was pulmonary atresia.
Pulmonary atresia is a form of congenital heart disease in which the pulmonary valve does not form properly. The pulmonary valve is an opening on the right side of the heart that regulates blood flow from the right ventricle (right side pumping chamber) to the lungs.
Arrangements were made for a planned induction so that Stephanie could give birth at a certain time so there was a medical plan in place. Eddie was born in October 2017 and underwent his first heart procedure at just two days old. He needed another procedure when he was three weeks old.
Little Eddie went on to have open heart surgery at six weeks old and spent much of the first 6 months of his life in hospital, including his first Christmas. He’s now almost 14 months old.
Stephanie describes the shock and emotion the family went through when Eddie was born.
“It’s been stressful, really stressful for us as a family. Me, my partner and my daughter who’s just two years old, we stayed with him throughout all his hospital care, but it wasn’t in just one hospital. Eddie’s had treatment in Cardiff, Bristol, Southampton and Great Ormond Street so the whole experience of going through your new born baby needing heart surgery is scary enough, and then we’ve had the added stress of moving to different hospitals for the different types of treatment and care he’s needed.
“After his first open heart surgery, he did have a rocky time, his blood pressure went too low. It was a complication from where the circulation had been altered during the surgery; it affected his whole body – he kind of shut down. That was scary. He’d come out of surgery and been out for about three hours, and was fine and just took a bit of a turn. They had to open his chest on the ward because they didn’t have time to get him to theatre and that was scary, that was probably the worst part. Within an hour, he was back to normal, and they couldn’t really explain it
“Eddie’s just amazing. He’s a really happy baby, always smiling. He just gets on with it. I think it affects us more than it does him. We stay positive because Eddie is so positive. We still have a long way to go, Eddie’s due to have further surgery in February and because he’s still being tube fed, he doesn’t really eat, but he’s a healthy weight and we just focus on one step at a time.”
Sadly one in four people in the UK die from heart and circulatory diseases but the BHF wants to change this and stop families from experiencing this devastation. The BHF’s Christmas Appeal aims to raise over half a million pounds for life saving research into all heart and circulatory diseases, including pulmonary atresia.
Adam Fletcher, Head of BHF Cymru, said: “Sadly, many families will be missing a loved one this Christmas because of heart and circulatory diseases. But the kind support of the public will make a huge difference to our Christmas Appeal by helping to fund life saving research to stop families from having to go through the heartbreak of losing a loved one to heart and circulatory diseases.”
1 in 4 people die from heart and circulatory diseases in the UK, but you can help keep families together this Christmas. Start with your heart and donate to the British Heart Foundation to fund life saving research: www.bhf.org.uk/Christmas