Adam Doyle, the father of eleven-month-old Noah, was forced to travel to Northern Ireland over the holidays in order to source vital supplies for his son. He joined The Pat Kenny Show earlier today to talk about his situation.

Noah will be one on the 19th of January. In the scan prior to his birth, we found out that he had an abnormal heart. Rosemarie my wife spent the last four-and-a-half months of the pregnancy in and out of the Rotunda hospital and the Coombe. There was no morning sickness a totally ordinary pregnancy and then five months in they spotted this issue in the routine scan.

How did you react? 

We were very worried. We are both very healthy people and we had no problems in our families. We referred to the Rotunda the next day which was worrying for us. We were told he had an enlarged heart. He has a double outlet right ventricle on one side of his heart instead of each side. It’s not the most complicated heart condition, not even close. The pregnancy was controlled. We did loads of tests and we were assured that this was a stand-alone heart problem and they were positive for the outcome of the baby. As the pregnancy went on they were more concerned. He was very small and he wasn’t putting on weight. About four weeks before the end of the pregnancy Rosemarie was brought in and induced.

Baby Noah was born in the Rotunda and the big fear was when he came out, the body would have to function itself and he wouldn’t be able to, but he was stable and got on well at the start. The morning after, the doctor in charge picked up on a list of things that Noah had. He has a number of other health problems besides his heart condition, including severe scoliosis, an underdeveloped skull, a kidney defect and narrow food and airways. His ears are not in the correct place a lot of facial features they knew that were indicators of various conditions. As he grew issues became more apparent. He was in hospital for about a week and our care was transferred to Crumlin. When he was ten weeks old he stopped being able to feed on his own he couldn’t take a bottle.

This changed everything?

They tried a couple of things. He was admitted to Crumlin where the feeding tube was put in and they looked at the other issues closely. When he was born he would have been referred to the National Genetic Centre as well as a priority centre. There is an 8-month wait but because of some of the issues they pressed harder to get a genetic doctor to look at him. What Noah has is very complicated. What the doctor is looking to prove is that he has Delange Syndrome.

You wrote a letter to the  Minister for Health Leo Varadkar about your son what did the letter say? 

In an open letter on Facebook last week to Minister for Health Leo Varadkar, Adam Doyle explained that the family had run out of special tubes and syringes needed to feed 11-month-old Noah Doyle and that hospital staff were unable to provide emergency equipment because of the delay to his son’s medical card application.“When we phoned your department to explain this, an urgent request was raised to the medical officer with a response promised in 24-48 hours,” Doyle wrote. To date, five working days later, we have had no reply.

“When we phoned your department to explain this, an urgent request was raised to the medical officer with a response promised in 24 to 48 hours,” Doyle wrote. To date, five working days later, we have had no reply.

To date, five working days later, they have had no reply.