Thomas (13, HLHS)

Hello, I’m Thomas. I’m 13 years old and I have Hypoplastic Left Heart Syndrome. Here’s my story about my life so far.

Fenestration Frustration

They knew about my heart condition before I was born so I was transported by ambulance to Birmingham Children’s Hospital. I had my first open heart surgery, the Norwood procedure, when I was 2 days old and I spent 3 weeks in hospital. When I was 3 months old, I had my second open heart surgery, the Glenn procedure, and spent 2 and a half weeks in hospital. I had my third and final open heart surgery, the Fontan procedure, when I was 4 years old and spent another 2 and a half weeks in hospital.

Due to complications after the Fontan procedure, I ended up with a fenestration that was larger that it should have been. This caused my blood oxygen saturations to be in the low 80s, so when I was 5 years old I had a cardiac catheter to narrow it. This made my oxygen saturations go up to the mid 80s. When I was 7 years old, I had another cardiac catheter to make my fenestration even narrower. This made my oxygen saturations to go up to around 87%.

During a hospital appointment, when I was 8 years old, my cardiologist said “Your heart frustrates me” because he wanted my oxygen saturation levels to be even higher. A few months later I had another cardiac catheter, this time to close my fenestration. I was disappointed that I had to have another one. After the operation, I was surprised at how high my oxygen saturation levels were – they were around 96%!

During a hospital appointment, when I was 8 years old, my cardiologist said “Your heart frustrates me” because he wanted my oxygen saturation levels to be even higher.

Nearly 5 years later, I’ve just started high school. It has three floors and over twenty classrooms on each one. I walk to and from school, however I get a bit puffed out when I walk up stairs, I don’t do PE at school and I have been given a lift pass. Having the catheters has enabled me to be more active. I can now walk at a good speed as long as I’m not walking uphill and swim for a few lengths at a time.
Although it was a frustrating few years when I had the operations, it was worth it in the end.

 

From Thomas

 

 

Be social with us - our latest tweets and posts