Alexandria is one in a hundred
Alexandria Butler is a Kilcullen resident who is very special. Because she'd likely be dead if she was born a generation ago.
She's not of an age to know it herself. But her parents Nicola and Stephen, who live with her in Laurel Wood, feel it every day. Every hour. Every minute.
"I know now that one in a hundred children are born with a congenitical heart defect," Nicola told the Diary last week, subsequently relating how Alexandria started going blue just a couple of hours after her quite normal birth.
"I went down to the nursery, and there I was told that they were 'working on' her. Eventually a doctor came and told me about the situation."
Nicola is now very familiar with the medical terminologies of her daughter's problem. In simple description, her little heart has a dual difficulty -- it lacks some of the systems by which blood is pumped through her lungs, and it has developed 'backwards'.
As further complications, she was born without a spleen, and her stomach and liver are displaced from their normal positions.
The surgeons managed to deal with the immediate life-critical problem by installing a shunt in the heart. Since then the little one has had two other operations, and now is deemed OK until she is about five. At that point, or perhaps a little sooner, a further bypass procedure will be carried out.
"She will eventually need a transplant," Nicola says. "They say any time between 20 and 45. The thing is, because of the position of her heart and the connecting arteries and veins, a transplant will be difficult, and if it comes to a choice for an available heart between her and somebody more 'normal', the other will get it."
That is, of course, down the road. And since Nicola was told by the doctors that her baby wouldn't have survived if she had been born twenty years ago, there's no knowing what further advances will have been made in another twenty.
"I've been looking on the Internet, and there's a lot of work going on with artificial pumps and other things," she says.
Originally from Naas, Nicola moved to Kilcullen four years ago, and up to Alex's birth worked in the Priory Restaurant in Kilgowan. She and Stephen have two other children, 11 year old Nicole and 7 year old Oran.
As would be expected, the whole situation has had a massive effect on their family. "It's dreadful to think that there's something wrong with your child, and you get to thinking that it might be your fault. You try to think back to what you could have done, but the doctors said it was just one of those things."
In addition, having to stay with Alex while she was in Crumlin Children's Hospital -- for a total of three months in the last year -- was another stress. "Apart from travelling up and down to the hospital, it kept me away from our other two children, and we had to move them around being minded in various places. Stephen also had to take a lot of time off work."
Things weren't made any easier by the fact that Nicola's father became ill with cancer during the year, and subsequently died. "It just seems that we've been living in hospitals for the last year."
Although Alexandria's medical care was taken care of under the health service, extra expenses like travelling and accommodation costs put a strain on the family's finances. Friends in Naas organised a charity football game to help out.
"It couldn't have come at a better time," Nicola says ruefully, raising a hand above her head. "We were up to here."
Now they have to look to Alex's future situation, with the prospect of significant medical bills down the line. The little girl's godmother and Nicola's best friend, Claire Farrell, has organised a Benefit Night in The Hideout on September 9 to kick off a fund. it includes music and food until late, and publican Martin Myles is sponsoring a significant part of the proceedings.
"We haven't looked too far forward about the medical expenses, but this is just to get something started, so that there will be something there to build on."
The €10 tickets can be booked in advance by calling 087 6147220/7683081. They can also be bought on the night.
Brian Byrne.
