For parents, waiting for an organ transplant for their child can be a traumatic experience. Georgina O'Halloran reports
Michelle and Donal Fenton from Lady's Bridge, Co Cork have been on an emotional rollercoaster of hope, doubt and fear since their daughter, Aimee Louise, was born two years ago with no renal function.
Aimee Louise has been on dialysis since birth, but will be put on the list for a kidney transplant operation once she reaches the minimum weight of 10 kilos. She is now 9.8 kilos and her parents are hopeful that her consultant will put her on the list sooner rather than later.
However, it is a never-ending battle as Aimee Louise has great difficulty in gaining weight.
"It's very stressful because you never know," says Michelle. "You're hoping every day that she'll be closer to 10 kilos and while one day she might have increased, a few days later she might be down."
Aimee Louise is on a form of dialysis that is administered at home, called CAPD. This means she has a catheter inserted into her tummy and is also fed by a tube because she has problems swallowing. But all this will change when Aimee Louise has her transplant operation.
"It'll be amazing. She'll be able to do everything that other children her age can do," says Michelle. "At the moment, Aimee can't even have a bath, she can't go swimming and you have to be careful if she is running around with other children," she says.
It will also bring great relief to Michelle and Donal who have struggled on their own to look after Aimee Louise, with virtually no help from the State. Michelle had to give up her job and the couple had to fight for 15 months to secure a nurse for three-and-a-half hours a week from the Southern Health Board.
"We're shattered at the moment," says Michelle. "At night we're up a lot because Aimee has problems tolerating her food. On an average night she is sick twice, although the hospital have done everything they can."
Without the help of family and friends Michelle does not know how they could manage. "There is respite available but only in Crumlin and being in a hospital ward is not ideal for Aimee Louise because it could mean her picking up an infection," says Michelle.
"Once she goes on the list, if she picks up as much as the common cold, she is taken off the list for six weeks."
Mark Murphy, chairman of the Irish Kidney Association (IKA), is very critical of the poor support given to parents who have children with renal failure.
The IKA approached the Southern Health Board on the Fentons' behalf three months ago, to extend their three-and-a -half hours of nursing care a week, but to no avail. However, a similar complaint on behalf of another family to the Western Health Board yielded a home nurse three nights a week.
According to Murphy, the issue of finding an experienced nurse to look after children with specialised needs, like Aimee Louise, is too often presented as the root of the problem but it is nothing but an excuse.
"If you can teach mothers how to take care of their children on home dialysis in a week, surely you can teach nurses in a few days," he says.
"A system that provides a service at home for children but doesn't provide the necessary back-up is flawed. Parents really want to do this but they need to have back up and they need not to get ill. But they are getting ill because they can't get the treatment and relief they need."
The irony of the situation is that parents, by looking after their children at home, are saving the State a fortune.
"The alternative is that this child be hospitalised permanently and the cost to the State would be enormous," says Murphy.
Michelle is also aware that once Aimee Louise is put on the transplant list, the drama is only beginning. They then have to find their daughter a suitable donor. Donal is hoping to donate one of his kidneys but there is always a possibility that it will not be a suitable match.
"Donors are badly needed," says Michele. "There are so many other parents and children out there waiting for a donor and the more donors that are available, the more likely we are to get a match for Aimee and for other children.
"I know it must be very difficult for families to make the decision to donate their loved one's organs. I don't know how people would make the decision but it's a wonderful gift to know that someone is benefiting."
In the meantime, Michelle and Donal look cautiously, but hopefully, towards the future. "We've had two years of dialysis, and we now know what to do when something goes wrong, so in one sense there's that comfort, and then there's that next step," says Michelle.
European Day for Organ Donation and Transplantation is on Saturday, September 18th. Information and donor cards are available in pharmacies, medical centres and Citizen's Information Centres around the country. Organ donor cards can also be obtained from the Irish Kidney Association on Locall 1890-456556.