My baby was 5 days old when I learnt he had half a working heart
My name is Amy and my son Harley is 10 years old with half a working heart.
When I was pregnant my antenatal scans showed that everything was fine. The doctors did not notice anything unusual about my baby and they said he was healthy.
I went into pre labour at 31 weeks and had a normal delivery lasting six hours. Harley was delivered at 6:05am on Saturday 7th January 2006, weighing 3 pounds 1oz. As Harley was nine weeks premature and so tiny he was shortly taken to the neonatal ward in the Royal Gwent Hospital. Two hours later I went to visit my baby and the nurses and doctors said he was doing very well but just needed to gain some weight, so overall I was very happy.
Unfortunately, five days later my world came crashing down when the doctor told me something was wrong with my child. I waited for the cardiologist to scan Harley and was then sent to a room where the cardiologist confirmed that my beautiful baby Harley had half a working heart, or hypoplastic left heart syndrome to be exact. The cardiologist said to me I had two options: to either take Harley home and let him pass away peacefully with all his family around, or alternatively to give Harley a chance in life by putting him through three open heart operations, plus other procedures.
We decided to give our little son a chance.
Before Harley could undergo surgery at Birmingham Children’s Hospital he had to first put on some weight. He was transferred to the University Hospital of Wales for seven weeks, before going to Birmingham where Harley had his first open heart operation. I was so scared and didn't really know what to expect. The next day Harley went down to theatre and for six hours I didn't hear anything.
After six hours I was able to see my tiny little baby, he was covered in wires and had a sticker on his chest saying ‘Chest Open’. It was so scary to see, especially because he was so tiny. I prayed every day and night hoping he would pull through. He was in intensive care for the first five days, then taken up to high dependency for a week, then he went to a ward for another week. I finally got to take my baby Harley home when he was 10 weeks old, weighing 4 ½ pounds. I was so happy to be bringing him home!
Ten weeks after Harley came home I took him back to hospital after finding little white spots on his scar. The doctor said it was fine so I didn't think much more of it. However, shortly afterwards Harley was rushed to Birmingham Children’s Hospital because his heart wasn't working like it should. When we arrived, they looked at the scar and said Harley had a massive infection, so they took him down to theatre for a cardio catheter.
When Harley came out he started having fits for two days, so they scanned his brain and to our horror he had a bleed on the brain, which affected the right side of his body. We were devastated, but a week later he was taken down for his second heart surgery and while he was in theatre the surgeon cleaned all the infection in his sternum and said he was very lucky. As the infection had spread, the operation took a little longer, but after seven and a half hours we finally got to see our baby boy. He was in intensive care for about 16 hours before being transferred to a high dependency ward.
After his operation and surviving a severe infection, our son Harley started getting stronger every day. Shortly afterwards we took Harley home but he needed physiotherapy, something he still needs to this day, for his arm and leg.
Harley was doing great for two and a half years and everything seemed fine with his heart. He was having cardio every day and we even took him abroad for his first family holiday, which he loved.
In June 2010 we took Harley back to Birmingham Children’s Hospital for his last heart operation. Me and Harley’s dad Darren thought this was the hardest operation for Harley as he understood a lot more and was very scared to go down to theatre. Then, five hours later we got to see our brave boy. Harley was in intensive care for about eight hours before being taken up to the high dependency ward. One week later Harley was walking and two weeks later he came home with us.
Today, Harley is doing really well and turned 10 on Thursday 7th January. Harley has yearly heart appointments, with the last one being on Wednesday 18th January 2016 and everything is going really well.
Thank you very much for reading Harley’s story, from Amy.