Luke was diagnosed as having congenital heart disease before he was born by Dr Uzun in the University Hospital of Wales Cardiff. We were given options and information on what would lie ahead and we decided to progress on and prepare for a future in and out of hospitals. There are many conditions that come under the term congenital heart disease but unfortunately Luke suffered from the more serious condition of a single ventricle heart. As Luke was diagnosed with his congenital heart disease before he was born, he had to be delivered by induced labour in St Michaels hospital in preparation for any surgery in Bristol Children's hospital which are in close proximity to each other. Luke was born in November 2004 and doctors explained to us that they may need to perform an operation straight away as they did not know how he would cope. When Luke arrived lots of doctors and nurses rushed into the room in preparation but were surprisingly pleased that he was breathing for himself and that he did not need any interventions. We got to see him for about 10 seconds and he was then whisked away to NICU in St Michaels. After a while we were able to go and visit Luke on intensive care. As many parents would agree when you enter the intensive care unit for the first time it is a very nervous and daunting experience, alarms sounding, tubes and wires everywhere and tiny babies in incubators. After a while you realise that they are getting the best care possible with someone constantly watching over them. As expected with his condition his oxygen saturations were around 75% compared to what is normally expected with healthy people being 98-100%, which caused Luke to have blue lips, fingers and toes, medically known as cyanosis . Luke had a very good night and was coping very well. We were able to stay in a room on the intensive care unit and visit him as often as we pleased.
The following day it was discovered that Luke had a condition associated with his congenital heart disease called imperforate anus, it was noticed as he had not gone to poo! This condition meant that he did not have a hole for his bum as it had not developed correctly. Doctors explained that he needed to have an immediate operation to form a colostomy in Bristol Children's hospital. Although this was serious as he was to have surgery straight away his heart was coping quite well which was a huge relief. He got through the surgery well and came out with a colostomy bag to collect his poo which was situated to the right of his belly button. We had to learn how to correctly change the bags and keep everything clean, and because he had the colostomy he had the cleanest bum going! After spending a few days on cardiac ward 32 we were allowed to take Lukey home and were told that when he showed signs of distress that it would be likely he would need his first heart surgery. It was strange being able to go home with the worry about what to look for incase he was in distress, but as parents we managed to cope effectively, and had lots of help from family and of course from our 2 year old daughter Katelyn who liked to help with Luke too.
After spending a few months home we noticed that Luke just didn't look himself and we were concerned he was looking more pale so decided to take him to our local hospital in Cardiff. When we arrived at the cardiac ward our cardiac liaison nurse eventually managed to measure Luke's oxygen saturations which showed as around the 50% mark, with this we were told that Luke would have to be taken to Bristol in the morning to have an emergency operation to allow him to have better circulation and increased oxygen, which was called a BT (blalock taussig) shunt. This operation would be the first of three that Luke would have to go through to make his heart as efficient as possible.
more to follow