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 fine. So we had extra scans during the pregnancy, and an especially good look at the heart and other organs but nothing showed up.
When Daniel was 3 days old the paediatrician picked up a heart murmur, he said it was nothing to worry about and he probably wouldn’t need medication or surgery. He sent us off to a paediatric cardiologist to check just in case. Both my husband Peter and I weren’t overly worried going to have the ultrasound and even commented on how terrible it must be for all “those people” walking past us with sick children. 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 repair. On the morning of his surgery we were all ready to go ahead when it was cancelled, we were devastated we had to go home and wait another 4 days until we could try again. This time it went ahead. The doctors and staff at Westmead were great and our surgeon Dr Winlaw did a fantastic job with Daniel’s repair. I can say that it was a very emotional and frightening experience but we got through it and were home again after about 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 but this time a bit more prepared and aware of what was to follow. We also had the utmost faith in both our cardiologist Dr Sholler and surgeon Dr Winlaw.
So at 19 months old Daniel went back to Westmead for his second operation. This unfortunately didn’t go well with Daniel having a reaction to the morphine and a terrible time in ICU. Then when back on the ward he started having high temperatures and ended up being one of the unlucky few that got an infection. He had to go back into surgery after three days and had the infection drained, more worry and pacing the corridors. He came 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 as this would not be good. So he was back into surgery again, this time he would go back into ICU again. So more worry and walking the corridors. He came back into ICU with the difficult job of trying to keep him as still as possible. He eventually got back to the ward and after lots of different antibiotics he started to recover and our happy smiley boy was back. We stayed for three and half weeks, finally Daniel was able to come home and even with an NG tube in he was very happy to get home and play with his sister again.
I am pleased to say that Daniel is now doing really well; he is a cheeky and happy little boy who loves puzzles, playing outside, riding his bike and anything to do with trucks, and cars. We feel very blessed to have Daniel our brave little boy.
Karen Sherlock (Daniel’s Mum)
