We received our second child’s (Elias) first cardiac diagnosis at our 20 week scan where we were told he had a VSD. We were referred to fetal cardiology at this point and during each of our appointments things seemed to become more complex and finally they considered Elias’ aortic arch may be interrupted. However we had to wait until birth to confirm this diagnosis.
When becoming involved with fetal cardiology we were signposted to Children’s Heartbeat Trust. We got a call from Cathy who was extremely reassuring and provided us with practical information as well as emotional support. Cathy informed us of groups of parents in similar situations to us, where we could discuss our child’s diagnosis.
Elias was born on 16th December 2019 in Dublin as there were no neonatal ICU beds in Belfast and they knew he would require an ICU bed when born. We saw Elias for around a minute when he was born. He looked very well and more pink than our first child who doesn’t have any cardiac issues. Elias was taken to ICU in the National Maternity Hospital, then an hour later taken to Crumlin Children’s Hospital as he was on prostin.
Elias had the first part of his Hybrid surgery at 10 days old on Boxing Day to put bands around his pulmonary artery and then another surgery a week later to put a stent in his ductus. We were in Dublin for three weeks from his first surgery and were there over Christmas and New Year. We returned to Clark Clinic in Belfast for a further three weeks before finally getting home.
At five months old Elias had his repair surgery when he got to 8kgs. There were complications during surgery due to Elias complex anatomy however he came through the surgery miraculously.
Elias is amazing and continues to inspire us every day. He has been mostly well since surgery however required re-admission a short time after discharge due to a pericardial effusion. Elias requires check ups every few months with his team at the Children’s Heart Centre and will require more surgery to replace the homograph put in place during his last surgery. We hope it will not be until he is around age 10.
They provided us with emotional and financial support both in Dublin and when back in Clark Clinic. Cathy checked in on us every day while in Dublin. She was so helpful providing a listening ear and offering friendly, appropriate advice.
We are currently fundraising to give something back to Children’s heartbeat Trust and to raise awareness of congenital heart disease. The team have been so helpful and supportive despite the confines of Covid.
Leisha McCorry and Stephen Murray, parents to Elias.
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