Owen’s Story

Children’s Heartbeat Trust help over 500 families each year. The Lydon family is just one of the many families we provide emotional, practical and financial support to. This Christmas, Hollie & Darragh (Mum and Dad) will have Owen home with sister Annie to celebrate his first Christmas. They have shared their story with us: 


Owen’s Story

“Owen’s story started in January this year when my waters broke at 32 weeks and, after a very long two weeks in hospital, Owen arrived in the end very quickly and breach. Darragh just about got there in time – there was 39 minutes between the phone call for him to come and Owen being born! Little did we know this was only the start of the drama.

At just two weeks old and after only ten days at home, we brought Owen into A&E at the Royal Belfast Hospital for Sick Children because he had a very swollen hand. It quickly became apparent that something else was going on looking at the very concerned faces of the doctors and nurses. Then when Dr McCrossan was called in to do an echo and he came back, brought in a chair and closed the door, we knew it wasn’t good.

Owen was diagnosed there and then with a major congenital heart defect. He had a massive VSD, a very rare aorta pulmonary window and a smaller ASD and was going to need surgery sooner rather than later. That was a Thursday night – by the Saturday evening he was in ICU with a respiratory rate of 140 breaths per minute (average for a baby is about 30). On the Monday we were on our way to Dublin for Owen to have open heart surgery the next day but because he was still so small (only 2kg at this point) the decision was made to insert flow restrictors to buy him some time to allow him to get bigger for the open-heart surgery.

“This is when we first heard from Children’s Heartbeat Trust (CHT). Liz contacted us while we were in Dublin and offered the most amazing emotional and financial support we ever could have imagined.”

Because everything happened so fast with Owen in the beginning we didn’t get a chance to meet Liz but the team at Children’s Heartbeat Trust had heard about Owen and Liz reached out to us and frequently checked in. This was invaluable to us at the time, just having the worry taken away about money when we didn’t know how long we were going to be there for and having to travel back to Belfast to our daughter regularly as well. There are so many things you don’t think about until you’re in that situation and the financial support from CHT just allowed us one less worry when Owen was so sick.

Owen spent 3 weeks in Dublin, two weeks in ICU and a week on the ward before being transferred back to Clark Clinic which became home for us for the next 6 weeks while Owen slowly edged towards the 3kg goal for surgery. Liz would call in once a week to the ward and it was always so lovely to have her pop in for a visit. CHT arranged a pizza delivery one Friday we were there as well, and you wouldn’t believe how much this boosted the moods of the parents in the ward for a little while. These small acts of kindness are honestly just invaluable, and we are forever grateful.

Owen had his life saving heart surgery in April and had a full repair. This time he only spent one week in Dublin and was straight back to Clark Clinic to all his gals. While there it was discovered that he had congenital lobar emphysema and needed another surgery but this time on his lung to remove part of it, so we went to Dublin again in June where we spent 6 weeks this time.

Once again, Children’s Heartbeat Trust were there with all the support we could need, even though the issue was Owen’s lung this time. But once you’re in the extended CHT Heart Family, you’re there for life and they look after you like family.

Owen was finally discharged in July after 5 months in hospital and we are so looking forward to attending CHT events now with him in the near future and getting to know other heart families who have been through it all as well.”

“We are forever grateful to Children’s Heartbeat Trust and Clark Clinic for looking after us all so well this year and I can honestly say that Owen wouldn’t be here today to celebrate his first Christmas at home without them.”

Owen’s Story told by his wonderful mum and dad, Hollie and Darragh Lydon.


This Christmas, you can help us support more children like Owen by donating to our #MoreThanAGift Christmas Appeal.

Every donation, no matter how small will help us to continue vital support to heart children and their families. Thank you.