Daniel's Story

We didn't know Daniel had a heart condition until after he was born.

I was told that I had a single umbilical artery during a scan in my pregnancy and that this could be related to some problems (one of which could be a heart condition) but this is not common and we would be fine. When Daniel was 3 days old, the paediatrician picked up a heart murmur, and he sent us to a paediatric cardiologist.

It was a huge shock for us both when Dr Sholler gave us the news that Daniel did indeed have a serious heart condition. He had Tetralogy of Fallot and would need open heart surgery if he was to survive past his first year.

We waited until Daniel put on some weight and so at 4 months old he was well and truly ready for his surgery. On the morning of his surgery we were all ready to go ahead when at the last minute it was cancelled, we were devastated! After 4 days of waiting, the surgery went ahead. I can say that it was a very emotional and frightening experience but we got through it and were home again after 9 days.

Daniel's next check up went well and we finally started to relax a little.

Nine months after the surgery we went for another check up and were again walloped with news that most unusually, Daniel had developed a second condition called Double Chambered Right Ventricle. After watching and waiting for another couple of months, it was decided that he would again need open heart surgery to have this repaired. This was booked very quickly and we were again feeling the stress and were quite frightened and emotional. This time a bit more prepared and aware of what was to follow.

So when he was 18 months old Daniel went back to Westmead for his second open heart surgery. This unfortunately didn't go so well with Daniel having high temperatures and ended up being one of the unlucky few that got an infection. He had to go back into surgery and have the infection drained, he came straight back to the ward and we all started to settle in again. Two days later we found that the infection had got under his sternum, something we were hoping wouldn't happen. So he was back into surgery again, this time he would go back into ICU after the surgery. He eventually got back to the ward and after lots of different antibiotics he started to recover and slowly but surely our happy smiley boy was back. We stayed for three and half weeks, finally Daniel was able to come home. He was very happy to get home and play with his big sister again. We feel very blessed to have Daniel our brave little boy.