Thomas Hayes
Thomas Hayes seemed at first to be a perfectly healthy baby. But an unnamed problem has left him requiring constant care from the state agencies and from Jack and Jill.
For the first three months of his life, Thomas Hayes was a normal, healthy baby. He passed his early developmental checks, he was feeding and thriving, and he appeared to all the world to be exactly what a three month old child should be. But something changed at that point, something that would have a profound effect on his parents Tom and Anna, on his older brother Evan, and most of all on young Thomas himself.
There is, as yet, no name for the problem that Thomas Hayes has. It started with jerky movements, which developed into seizures. A doctor who saw Thomas recommended that he be brought immediately to hospital, where his condition deteriorated rapidly. Whether it was an underlying condition which was causing the seizures, or the epilepsy that led to massive brain damage, the reality was that, for Thomas and his family, nothing would ever be the same. Initially, the neurologist held out at least some hope that a drug, or a combination of drugs, could led to an improvement — but, some time later, the unthinkable happened — a progress report told Tom and Anna the terrible truth that young Thomas would never come out the other side.
“They did every test,” said Tom. “They did biopsies, they did tests in Paris and London, they did metabolic tests, but they couldn’t even find a name for the problem. We got second opinions, but the news was the same — there would be no cure for Thomas.”
The biggest issue became how to control the seizures which were characterised by arm movements, rolling eyes and grimaces.
“In the beginning, we were dreading bringing him home – we felt that we would have to stay up with him all night because of the seizures,” said Tom. “That first night, we were hopping out of bed, because Thomas would shout out with a piercing cry. But Jack and Jill came in and helped us to find a nurse. Sandra (a senior nurse with the Jack and Jill Foundation) found us people who had actually looked after Thomas in Temple Street — it was important for us to get nurses who we were comfortable with.”
Markedly Different Experiences
Some parents of Jack and Jill children have had terrible experiences with the State and its healthcare services. Tom and Anna Hayes’ experience is somewhat different, in that they have found the HSE’s services to be very good, from the Neurology Department in Temple Street to the nursing care that has been provided to date by the HSE. But even with the quality of care that they have received, they are more than grateful for the assistance that has been provided to them by the Jack and Jill Foundation.
“For example, we might get one night of nursing care from the HSE, and two from Jack and Jill,” explained Anna. “But the future is not as clear. Thomas turns four in February, and that is the age at which the Jack and Jill nursing care will cease. So we will be looking for more from the HSE, and I suppose that it’s a case of bad timing, with all the cutbacks in the health services.”
Coping With Seizures
Currently, Thomas spends days in St Michael’s House, one of Ireland’s largest providers of services to children and adults with intellectual disabilities. Nurses come in the evenings, usually arriving at nine and staying until around 7.00 in the morning — which is very welcome respite, considering Thomas’ predisposition for seizures.
“He actually had a very bad day the first day that we brought him home,” said Anna. “There is no real pattern to it. We have found a drug, which seems to have improved him, and seizures are definitely managed better now. But, for example, last night he had a bad seizure — although the good thing now is, if it is a bad seizure and the nurse is not here, we can ring Temple Street, and they can usually guide us through what to do.”
Unfortunately for Thomas, it is not just his seizures that make him require 24-hour care. He is severely developmentally impaired, and although there have been some signs of tiny improvements, he will almost certainly never be able to function without full-time care.
“His movement has improved, although his head control is not good,” said Anna. “He can roll over, and he is more active at home than he was in hospital. But still, there is little, if any, recognition.
There is certainly no voice recognition, or physical recognition of us as his parents. He’s a beautiful little child, but there is no smile, and that’s tough. At three months, he used to giggle, and I really miss that. We do try to sit on our emotions, but words can’t describe how that feels…”
Indeed, quite aside from the physical demands which are placed on a family when they have to deal with a severely mentally disabled child, there is a whole raft of emotional trauma to contend with.
Staying Positive
“Everything could become so negative — if you let that happen,” said Tom. “But we have come to accept Thomas for what he is, rather than what he could have been. It has been pretty horrendous, especially for the first six months - but as each year has gone by, we have learned to accept it more and more. I won’t say that it hasn’t been tough on us, but you have to get past all that.”
The ability to cope becomes especially important when there is another sibling to look after. But this ability to cope has been helped by the fact that, to date, Thomas and the family have been looked after very well — a fact that Tom attributes, at least in part, to the fact that the family lives in Dublin.
“Everything, from a health service perspective, has been pretty positive,” he said. “In hospital Thomas had every facility. At home we have the equipment we need, we got seats for the car and seats for the house. So up until now, we haven’t had a bad experience, although we do fear for the immediate future, because from here on in, assistance will be decided on a means test rather than on the needs of the child. It’s a sad indictment of the attitudes of the state.”
Part of the Family
But there is still the cushion of the not-forprofit sector which has given the family back at least a part of their lives.
“Because we already knew the nurses who we got through Jack and Jill, they have become a part of the family,” said Anna. “It’s great to have them, especially for Evan, because we can’t let him miss out on the sorts of things that normal families do. We do tend to have to do things separately as a couple, but like anything, you just have to find a way around the problems. We can even bring Thomas out sometimes, because his feeding system is portable.”
Shared Grief
“It has definitely given us our lives back,” agreed Tom. “We were at the Jack and Jill family day (in Royal Hospital Kilmainham), and it was comforting, even in a small way, to meet families who were in a similar situation to us. I won’t say that it was reassuring, but there is something to be said for the sort of shared grief that it allowed for. Everybody asks themselves “why us?”, and, with all the negative emotion that we have gone through, it is important for us to be able to see others who are getting on with their lives.”
And, even outside of the nights of nursing care and the events that are put on by Jack and Jill, there is the added comfort of knowing that there is an organisation that is there to support these families who have found themselves in very difficult situations.
“Sandra gives us information, she tells us things that could be useful to our situation,” explained Anna. “But, as well as the support, there is also the friendship. The people at Jack and Jill are just lovely, and everything that they say comes straight from the heart. It is a difficult thing to grasp, but the only way I can describe it is to say that everybody is so positive in what is basically nothing but a negative situation. It is very reassuring, very comforting to meet people who can pick out every little positive thing from a situation like the one we are in.
“We will have the help of Jack and Jill until Thomas is four, and we will definitely miss them,” she continued. “We’ll miss them for the support that they have given us, and we will miss them for the friendship that we have had with them and with everybody that we have met through Jack and Jill.”