Concern about the baby’s small size at the end of Dawn Dunbar’s pregnancy was the first hint that there might be a problem with her second child. But, after her labour was induced a little early, Cathal weighed in at 2.5kg (5.5lb) and didn’t need special care.
However, the paediatrician recommended testing him for cytomegalovirus (CMV), which is harmless to most adults and children but can be dangerous in the womb.
“Usually hearing is the problem but that was fine; all his blood tests were fine but when they did a urine test, they did find he had CMV,” she says. “Not many people have heard of it, but it causes a huge amount of disability in children. We were on the unfortunate side of the scale, it was so severe.”
The levels of infection weren’t particularly high, but it had hit Cathal just at the time his brain was developing, resulting in spastic quadriplegic cerebral palsy. He has a severe form of epilepsy, is non-verbal and has difficulty swallowing.
The diagnosis came after an MRI scan at six weeks confirmed damage to the brain and Cathal was admitted to Crumlin children’s hospital to have anti-viral medicine administered. Suddenly, the happy visions Dawn and her husband Jamie had of what it would be like raising Cathal alongside his big brother Conor, who was 23 months at the time, were shattered. “I remember lying in the hospital wondering would I ever be able to take care of this child at home? He wasn’t in great form in the hospital, on medicine that wasn’t very nice. We felt sorry for ourselves, we were grieving.”
Other children were coming into the hospital to get better and she and Jamie did not know what the future held for their family. Cathal was about six months old when a disability nurse referred them to the Jack and Jill Children’s Foundation for nursing care support at their home in Ferns, Co Wexford. They have been able to use those funded hours ever since in whatever way suits their family. Early on, Dawn used to take the care in twice weekly blocks of five hours; one she would use for catching up on chores but the other she would spend with a friend who had a child of a similar age to Conor and they could play together.
“That was my saving grace. I had a couple of hours to get away and pretend that everything was okay even though our world had fallen apart and we were grieving very hard.”
For Conor, who will be eight years old in April, there was a dawning realisation that Cathal is a bit different. His parents have been very open, explaining that Cathal got sick while he was in her tummy, that his brain is affected and there are things that other children can do that he can’t do to the same extent. She remembers when Conor was nearly three, he noticed that a family friend’s baby was starting to reach out, even though she was younger than Cathal. “Conor said to me, ‘Mummy, why does she grab and Cathal doesn’t?’” For a long time afterwards she could see Conor trying to get Cathal to grab by presenting him with a toy and explaining to him it was very easy to hold, he just had to put his fingers around it.
“They have a lovely bond,” says Dawn who sometimes has to rely on Conor to keep his brother entertained while she is getting jobs done. “He does have a bit of responsibility and I don’t see that as a bad thing.” At the same time, he is able to tell her when he’s tired of doing it.
Although Cathal needs a lot of his parents’ attention, she has never seen Conor get jealous over that. “He’s never said anything but I think that is due to the fact that we have Jack and Jill care and we can focus on Conor for periods of time. Conor has never had to miss a swimming lesson.”
Currently on 20 hours a month, they schedule some fixed time, but the carer will also respond very flexibly to help them keep life as normal as possible for Conor. For instance, if he is having friends around for a playdate, Dawn likes to be fully available when there are other children in the house.
The thoughts of Cathal going into full-time care would be horrendous; equally the thoughts of Conor being burdened with a disabled brother
— Dawn Dunbar
Unfortunately, the family will not be eligible for Jack and Jill support much longer because Cathal will turn six on March 14th and the charity can only cover children aged six and under. . The Dunbars have applied for HSE nursing assistance instead but do not expect the same continuity of care or flexibility.
“I won’t be able to leave the house,” she says in reference to the “in loco parentis” rule that the HSE introduced some years ago for paediatric homecare nursing hours, requiring parents to nominate another person to be there if they want to go out. However, Minister for Health Stephen Donnelly said in a Dáil written answer last November, that the HSE had told him it was not currently implementing that rule. Instead, it had introduced a “planned parental absence guideline” that could be agreed at the start or in a review of the homecare package.
While that might allow a parent, after a risk-assessment form has been completed, to leave to pick up another child from school, there isn’t the flexibility for a parent to go to the gym, says Sinead Moran, a nursing manager with Jack and Jill, or to get away for two to three hours. She believes the bureaucracy is unnecessary. “If a child is sick, none of the parents would leave. They won’t go far, they’ll stay around.”
But a knock-on effect of these operating procedures, she reports, is that families who may already have substantial home care packages from the HSE, still need Jack and Jill to fund day hours that they can use flexibly.
Cathal started in mainstream school, Scoil Naomh Maodhóg in Ferns, last September, which delighted his big brother. It has also enabled Dawn, a primary school teacher, to go back to work on a job share. “Conor is so proud, pushing in his wheelchair in the morning,” she says. “He comes home to tell me that Cathal is really popular with all the girls. He keeps an eye on things but, at the same time, he gets on with his life as well.”
He does express sadness if Cathal is going through a tough time with seizures. On the flip side of that, when he came home from a recent sleepover with his cousins, he observed that they fight quite a lot, adding “I am kind of lucky to have Cathal, he never fights with me”. His parents try to focus on the positives with him but naturally, between themselves, have concerns about what might lie ahead.
“Cathal is Conor’s only sibling and we do wonder, number one, if we will be lucky enough to have him into adulthood and, number two, there is the worry if we go before him, where does that leave Conor? Obviously, you can’t think too far ahead or you would drive yourself mad but it is something we do discuss.
“The thoughts of Cathal going into full-time care would be horrendous; equally the thoughts of Conor being burdened with a disabled brother,” she says and, although unsure about expressing it like that, “it is a burden to carry in many ways”, she adds candidly.
“Obviously Cathal has brought us lots of joys and lots of love but it is intense caring for somebody with a disability. We are able to do it because we have support but we don’t know what the future holds for the boys and that is something we worry about.”
