We lost our little girl when she was just over a year old. When we discovered she had a heart problem, we thought it was the end of the world.
Through our support group we met two other families whose children had been born with Truncus Arteriosus and are now fine.
So when Daisy had surgery at three weeks old we were optimistic. The surgery seemed to go well, but the promised recovery just didn’t happen. Endless infections and kidney failure kept her in intensive care for month.
We were told that she had a DiGeorge Syndrome, and that her immunity was very poor it was unlikely that she would ever be a healthy child.
We looked up DiGeorge Syndrome and were thrown into a state of misery by the number of problems Daisy could have. Mostly we feared the predicted retardation – although she didn’t develop at the rate of a normal baby that was never an issue during her short life.
Came the day that we finally brought her home from the hospital – her heart function was quite good, but she still needed a naso-gastric tube and oxygen and a huge range of medicines. My family were able to help out and for two blessed weeks I did everything for Daisy, and felt for the first time like our little girl’s mother.
But she had a relapse, back into hospital, and this time she didn’t make it home again.
Now that the first shock of losing her is over, I can smile at the memory of her smiling and waving as we came towards her hospital cot, and of the pride we felt at the place she made for herself in so many of our lives.