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Jack Brady Moriarty
Jack Brady Moriarty has, at the age of five, outgrown the nursing hours provided by Jack and Jill. But his family can still turn to the organisation for help and support Every birth is a nervous time for parents, hoping and praying that everything will go according to plan. But nothing can prepare a parent for the discovery that there is something wrong with their little baby – although, in the case of Jack Brady-Moriarty, now five years old, the tragedy was compounded by the fact that nobody seemed quite sure of what the problem actually was in the first place.
Because of this, little Jack’s first six weeks of life were spent in hospital, while doctors tried to figure out what was going on. A combination of luck and learning led to a geneticist identifying the issue as Wolf-Hirschhorn Syndrome, a syndrome characterised by severe mental retardation, as well as seizures and an inability to feed.
“We were told that he would be fully mentally and physically disabled – what is known as Global Delay,” explained Amanda Brady, Jack’s mother. “He can’t walk, talk or feed, except for a tube going straight into his stomach. We were told that he would never recognise us, and never communicate with us. But we took on the fact that that was the way that Jack was meant to be.”
Any new baby requires looking after, but in Jack’s case, the job became infinitely more challenging. Unlike certain babies with Wolf-Hirschhorn, there was no congenital heart defect – but there were other issues and aside from regular seizures, the biggest issue on a daily basis was his feeding.
“He had a feeding tube through his nose, and the first time that the nurses tried to show me how to do it I ran out of the ward,” said Niall, Jack’s father. “But I knew that the only way to get him home was to be able to do it for ourselves. And it wasn’t until Jack was more than a year old that we got a pump.”
Left to struggle on their own
Jack’s syndrome has meant that he has been in and out of hospital for much of his young life. The greatest cause of hospital visits has been his seizures (although he has responded well to new medication), and his feeding tube also used to lead to a large number of chest infections. But he has now been with St Michael’s House since he was five months old, where he has received physio and OT, and the Jack and Jill Foundation has intervened in terms of providing nursing care and advice. All of which has been invaluable, because without these not for-profit organisations, the family would have been largely left to struggle on their own.
“We are relying on charitable organisations in Ireland, because the HSE doesn’t have a unit to deal with cases like ours,” said Niall. “Jack needs 24 hour care, and we can’t leave him with somebody who doesn’t know how to take care of him. He has started in St Michael’s House, which does offer practical help, and we have a nurse now. At first, it was for five hours per week, but because he had been so sick, Jack and
Jill organised a nurse to come in for 15 hours a week, where as the HSE were providing five hours per week.”
Still, the HSE’s ability to provide funding for a nurse does not always mean that a nurse comes for those hours every week. Last year, Niall and Amanda had the funding for 400 hours of nursing care, but, because the agencies were not in a position to provide a nurse for the family, they ended up with only about 60 hours of nursing care. But, of course, there was nothing else to do except to get on with things, and the
situation has now been resolved. Since the Jack and Jill hours stopped when Jack reached five years, the HSE has stepped up to provide the family with 10 hours a week.
“It’s hard to accept the help,” said Amanda. “You like to think that you can do it all for yourself. But, when the nurse did come to us, it was the first time that we had had any respite since Jack was born. Our families tried to help as much as possible, but after the first seizure, people became nervous. They do take Adam a
lot, which helps, but it’s different with Jack — you never get used to the seizures.”
Adam is Jack’s older brother, who has had to cope with the issues that come with a severely disabled family member — alongside the regular tribulations that come with being a seven-year-old.
“When Jack first came home, Adam did very well for a two year old,” said Amanda. “He used to worry a lot when Jack was in hospital, and he found it very hard when Jack was in the ICU — he asked me to promise him that Jack would not die. But apart from that, Jack’s just Jack to him.”
Still, no matter how well a family copes with the difficult situation of having a disabled child, it remains a difficult situation. So, despite some initial reluctance to accept the assistance that was being offered, it soon became clear that, finally, some help was at hand.
“The referral for Jack and Jill came through the hospital,” said Amanda. “Sinead Moran, a senior nurse from the Jack and Jill Foundation, came out to us and I felt immediately that here was somebody who could help us. She didn’t come across like somebody being official – she cut through the crap and spoke to us as a
Of course, no mother will be comfortable with handing her son over to a nurse, but, said Amanda, once you get to know the nurses, they become like family — and, in any case, Niall and Amanda would have already known many of the nurses from Jack’s time in hospital, because many of the hospital nurses do extra hours for families of Jack and Jill children.
And the benefits of having even a few hours of nursing care every week are astronomical. “It may not seem like much, but we usually use the time to do practical things,” said Amanda. “As Adam gets older, we can take him to the park, and do the sorts of things that ordinary families would take for granted.”
In addition to the nursing care funded by Jack and Jill, the Foundation also gives the family a first point of contact, should they require anything in particular.
“If we need information, or contacts, it is Jack and Jill that can usually get things moving,” said Niall. “If anything is wrong, it’s Sinead who I will turn to — even now that Jack is five, she’s the first person that I will ring.”
On an upward curve
While it is difficult for families to be hopeful in situations such as the one in which Niall and Amanda have found themselves, Jack has actually shown signs of improvement in recent times. Ever since the feeding tube was taken out of his nose, he has started on an upward curve, and his chest, previously so prone to infection, has improved greatly. He has also started attending school, and, according to his parents,
he loves it.
“He comes home tired,” said Amanda. “Since he started in school, he wants much more attention and interaction. He’s the only boy in a class of girls. Also, he had a big operation in May, and when he came back, he was much brighter, always wanting to do more.”
What is most noticeable about Jack are his huge, expressive eyes. He is also quite a smiler, has a strong grip, and reacts to people’s presence in the room. All of which is a far cry from the picture which was originally painted by the neurologist of an unresponsive child with little hope of interaction with his parents.
“We’re dealing with things at home more, and he is not in hospital quite as much,” said Amanda. “But we also know our own limits, and we know the points at which we will have to bring him back to hospital. As he gets older and stronger, things will probably become that much harder for us, but we find it difficult to
think too far ahead anyway.
“We did get a standard grant from the government for adapting the house before (Jack and Jill referred us on to the HSE), but in the future these grants will be means tested,” she continued. “The testing should look at what the child needs, and not be based on what the Mum and Dad earn. Also, we have been lucky
so far, now that Jack is five, to have got at least some hours from the HSE, but we had to fight for them, and Sinead helped again with this.
The government is simply not providing the funding to deal with cases like ours, and this puts pressure on the charities, which in turn puts pressure on the families.”
Still, even with all these difficulties, the family is soon travelling on their first family holiday abroad. The destination is France, largely due to the country’s excellent health services, and due to the quality of the hospitals that have to be close by. That this trip is possible at all is down to the slight improvements that Jack has made as he has grown; and the fact that he has been able to thrive in his own way is, at least
partially, down to the work of the Jack and Jill Foundation.
“What (Jack and Jill founders) Jonathan and Mary have done is truly amazing,” said Amanda. “The memory of their Jack will live on in every family that they help — we would have been lost without them.”