My name is Gillian, my husband Brian and I are proud parents to our little heart hero Alexander and this is our story….
When we went for our 16 week foetal scan we were told there was something wrong with our baby’s heart. The team told us what they could see from the scans was likely to be one of two heart defects, but they couldn’t yet determine exactly what it was. It was devastating for us. We were told our baby might not make it to full term or we might not go home with a baby. I will never forget that day and there are no words to describe how we felt in that moment. The remainder of my pregnancy was incredibly difficult for Brian and I because of the uncertainty of our baby’s future.
Due to our baby’s heart condition, I had to give birth in the Coomhe Maternity Hospital in Dublin as we expected open heart surgery very quickly after birth. On the third of January 2018 our lives changed forever when our gorgeous son was born. Alexander Kearney arrived and we were told we couldn’t even touch our little boy yet because of ‘the risk of death.’ Alexander was diagnosed with Hypoplastic Left Heart Syndrome and was cared for in the Paediatric Intensive Care Unit of Our Lady’s Children’s Hospital in Crumlin, Dublin (OLCHC).
At just 48 hours old, Alexander went through his first major open heart surgery. The nine hour long procedure was unbearable, every few hours the Cardiac Liaison Nurses would call us and give us an update, our hearts raced with fear every time the phone rang, as always in the back of our minds something was wrong. Thankfully the surgery was complete, the wait was over and we could see our little hero.
Alexander spent one week in PICU 2 and was then transferred to the Children’s Heart Ward in OLCHC were he spent a further four days. Then on the 14th of January 2018 Alexander was transferred to Clark Clinic in Belfast.
Alexander’s recovery was slow but steady and each day we could see subtle progress. Brian and I stayed by his side day and night while in Clark Clinic. Alexander was learning to feed and as parents we were learning to administer medication and the notable signs of low saturation levels. It was really a very difficult time, but we knew we both had to be strong to support Alexander.
On the 27th of February 2018 we were told we could go home as a family for the very first time, Brian and I were filled with every emotion, as for the past number of weeks we had the support of the fantastic team at Clark Clinic and Children’s Heartbeat Trust but now we were going home to look after Alexander in our own. I will never forget Alexander’s first night at home we both watched over him all night prettified to sleep in case anything would happen to him. As time went on we did learn to relax a little bit more!
Over the past number of months Alexander has been in and out of hospital a number of times with low saturation levels and on the 19th of June 2018 we were once again admitted to Clark Clinic where he was put on constant oxygen as he was unable to breathe on his own. He spent two further weeks on Clark Clinic with Brian and I by his side waiting patiently to get a date to go to Dublin for his second surgery.
Finally, on the 1st of July 2018 Alexander was admitted to OLCHC where he was prepared for his second stage surgery, the Bi Directional Glenn, which took place the following day. Another nail biting five and a half hours, 3 days in PICU, 2 days in the Children’s Heart ward later, Alexander was taken back to Clark Clinic to complete his recovery from his surgery. Thankfully, five days later on the 12th of July 2018 we were going home once again.
Over the next few months we attended out-patient appointments to ensure everything was ok and his saturation levels and colour had improved greatly as did his feeding. There were times it was very difficult as Alexander had a feeding tube that he loved to pull out, there was one particular week he had pulled it out seven times! As parents there were times we did struggle greatly but we knew in our hearts we had to keep plodding on and things would start to get easier.
Alexander now is 13 months and doing great, He is the most lovable little boy who beams with happiness and pours out affection. He is crazy about postman pat and tractors, loves outdoors and animals.
Alexander still has the final stage of surgery to contend with and may even need a heart transplant in later life, it is hard, it’s an emotional rollercoaster but with time it does become easier. If I could give any word of comfort to a parent who is at the beginning of their heart journey never ever give up, take one day at a time and be strong.
Gillian, Brian & Alexander.