My daughter Amelia was born on 1st February, 2002 at Gleneagles Hospital. On realising that she was not taking her feeds and her activity level was very low, doctors decided to have her heart scanned. I was told the most shocking news of my life that my newly born princess not only has a hole in her heart but has various other valve problems too. However, doctors decided to monitor her progress closely and wait until it was best to operate on her.

Her first surgery to correct her valve problem was successfully done in 2006. It’s not easy to explain what a mother goes through in the waiting lounge when the surgery is in progress. I cried and wished to be able to hold her in my arms again.

The second horrifying episode happened in 2008, when I took her in emergency because of the shortness of breath, fever and swelling. Doctors decided to repair her leaking valve and she was admitted. During her pre-operative stay in ICU, she coughed out the ET tube which resulted in cardiac arrest. Doctors managed to revive her within thirty minutes. However, their concern was that due to the lack of oxygen she might suffer from memory loss. That felt like the worst nightmare and I couldn’t do much except cry. The major task, the operation was still to be done. A week later when she was a bit stable, the surgery was performed. There were many ups and downs in the ICU later but she fought well.

The two long months stay in ICU was a hard task. My girl was fighting her battle and I wanted to be there in whatever way I could, to tell her that I love her very much and how I want her to brighten my house with her sweet laughter. I was there every morning with flowers that I got from the temple, told her stories, and played her favourite music.

She was intubated for too long and doctors suggested Tracheostomy as the next step. She was shifted from BIPAP to CPAP. During her stay in the step down ward, nurses taught me how to feed her through NG tube and how to change Tracheostomy tube. After long, tiring and stressful six months in the hospital, we brought her home. Another three months later, her tracheostomy was removed. I cannot explain my happiness when she called mummy and daddy after almost a year.

In mid 2009, she was admitted again to get her AV valve replaced. She was put on A-V pacing for one month but we were told this will be replaced with a permanent pacemaker when the time will come. That time came in 2010, and the permanent Pacemaker was inserted in her.

Amelia is 12 years old now. I’m glad that she’s healthy and eat well. She’s a cheerful girl. She’s attending MINDS - Special school at Fernvale and doing well in her studies.

Contributed by:
Jeannie (CHAPPS member)
Mother of Amelia