Brody's Story
Brody was born with Hypoplastic Left Heart Syndrome, a condition in which the left side of the heart is underdeveloped. Brody’s mum Georgina shares their story with us:
When I was 20 weeks pregnant at my anomaly scan, our journey with Children’s Health Ireland truly began. We learnt that Brody’s left ventricle in his heart was significantly smaller than the right side. After investigations, he was diagnosed with hypoplastic left heart syndrome.
I found it difficult to enjoy the rest of my pregnancy as I worried about what the outcome would be when Brody was born. The same day I met with the cardiology team, to put in a plan in place for when Brody was born, they showed me around the Children’s Heart Centre and the ICU. The team truly thought of everything to keep us as much at ease as possible.
Brody was born on the 29th of January 2016, and that night was rushed straight from Holles Street to Children’s Health Ireland. I got to hold Brody for less than a minute before he was whisked away for urgent care. As a first-time mum, this was extremely difficult as I was not well myself after the birth. It is so hard to mind yourself while also being there for your sick baby, but I knew Brody was in the best possible place. It was 24 hours before I got to see Brody again. From the minute we walked through the door of the hospital to visit Brody, our lives changed forever. It was such an overwhelming time but once we met with the team looking after him, they offered us positivity and reassurance.
The staff were incredibly honest and open about how things could go. They thought of every small thing to make us as a family feel at ease, such as having a wheelchair waiting for me when I arrived since I had just given birth. Professor Kenny accompanied us when we went to see Brody for the first time and explained our treatment options to us. Professor Kenny informed us that as Brody was quite unwell, without surgery within the first five days of his life he wouldn’t survive. This surgery would be the first of three surgeries recommended for children with Brody’s condition.
Brody was three days old when he had his first open heart surgery. His heart was only the size of a walnut then, and the surgery lasted six hours. Brody was brought straight from theatre to ICU and put on a ventilator for two days. Afterwards, Brody unfortunately developed a serious infection in his wound and became very unwell again. It was six weeks before he was deemed well enough to be brought home. I was terrified when Brody first came home as he was on so many medications, we were constantly keeping an eye out for many different signs and symptoms to ensure he wasn’t becoming unwell. Brody was brought back to hospital every week for a checkup with the cardiology team and this regular contact provided us with so much comfort and reassurance.
Up until he was six-months-old, he was in and out of hospital. At this stage, we were informed that Brody would need his second cardiac surgery. Brody initially thrived after this surgery and came home eight days later. However once at home, I noticed that Brody was pale, not feeding well and vomiting often. We took him back to Children’s Health Ireland at Crumlin and learnt that at six-months-old he was going through massive heart failure. Even through such a scary and uncertain time, Brody was still smiling as he was brought into the emergency department. This night was a massive blur, Brody’s oxygen levels were dangerously low and all I can recall is alarms going off all night long. He was brought straight down to the cardiac ICU and his heart had to be shocked three times throughout that night. Professor Kenny came from home that night to be with Brody, we will truthfully never forget him for it. Brody was put on a ventilator for a week to give his body a rest as his heart was so weak.
While this was going on, Brody’s dad Wayne and I had to travel to London to be assessed for suitability for transplants. Leaving Brody at such a vulnerable time was heartbreaking but thankfully his nanny stepped in and stayed by his side for the day and a half we were gone. Brody stayed in hospital for three months, but being the stubborn boy that he is he hung in there. Professor Kenny and all the staff advocated for Brody throughout this time, and we learnt that Brody would not require a heart transplant after all.
Brody came home at nine months old and was hitting all his milestones, he was generally well and a normal happy baby. He still attended hospital every one-two weeks, which assured us that we could call them at any time. Brody continued to thrive, and when he was five-years-old he needed to get valves repaired in his heart, and at the same time they completed the third stage surgery.
In December 2023 Brody had a keyhole surgery to improve his heart function further, he was the first person in Ireland to have this procedure. They used a 3D model of Brody’s heart to assist with the surgery; these models would not have been possible without funding from Children’s Health Foundation. Within a couple of hours after the surgery Brody was sitting up, eating, and drinking. He was able to go home after five days, which I still can’t comprehend as had it been open-heart surgery, the recovery would have been so much longer.
Brody is a brand-new child, he can run and play, he is now swimming every week. He is brilliant in school and has become a very active child. His body is trying to catch up with the new energy he has, and I for one can’t keep up with him!
The entire team at Children’s Health Ireland were nothing short of amazing throughout our journey. Everyone has a lovely sense of camaraderie in there. There are so many staff that I could mention that didn’t feel like staff, they were more like friends. We were so blessed with the facilities in the Children’s Heart Centre, we couldn’t imagine the old conditions and not being able to stay in Brody’s room every night. Days are long so having supports like the kitchen and parents’ accommodation nearby was so important, without fundraising we wouldn’t have a lot of these.
We always understood that Brody was in the best place, even though of course you still don’t want your child to be there. But the support we had from the staff got us through some very dark days and we are eternally grateful.