When Saoirse Gill was born in a Sydney hospital four years ago, she was “jittery” and her Irish parents, who had lived in Australia for nearly 10 years, knew something wasn’t right.
“It was a scary time,” says Deirdre Gill, recalling how her daughter spent the first two weeks after birth in neo natal care. But she was three months old before she had her “first full, true seizure”, while sitting on the knee of her father, Andrew, at home.
“She held her breath and went quite blue.”
Uncontrollable epilepsy is a hallmark of the rare gene mutation, Scn8a, with which Saoirse was later diagnosed at nine months of age. There are only an estimated 450 cases worldwide.
After the diagnosis, the couple decided it would be best if they returned to Ireland with Saoirse and her older brother, Tiernan, to have more family support. Also, “we felt a bit trapped out there as Saoirse wasn’t safe to fly. They said ‘you can go, but go one way’.”
By Christmas 2017, they were living in Deirdre’s home town of Enfield, Co Meath, with her parents and extended family close by. But the following January, Saoirse became very unwell.
She had to spend more than three months in Temple Street Hospital, where she regressed significantly as her seizures escalated. Before she went in, she had been smiling and nearly sitting up, says Deirdre.
After that spell in hospital, “everything was wiped and it was like taking a different child home”. No longer able to be fed orally, Saoirse was also diagnosed with osteopenia, a weakness in her bones, so when she seizes she is liable to sustain fractures.
The couple were already beginning to wonder how they were going to cope with their daughter's care at home when they were referred by a nurse at the hospital to the Jack & Jill Children's Foundation, which provides home nursing care to children with life limiting conditions.
“It was such a relief to have someone in the early days to walk us through all this,” says Deirdre. “The complexities are easier to face when there is Jack & Jill expertise to guide you through everything, from establishing a routine for your child’s care needs to organising supplies and how you order your oxygen etc.
“It’s so much more than the break you get, it’s the support as well,” she stresses. “Particularly in those early years when you’re trying to figure it all out and still, maybe, in a bit of shock from the diagnosis.”
Although Deirdre is a nurse by training: “I hadn’t done a lot of this stuff in so long”, she explains. Anyway, “it’s different when it’s your own child. There are things you have to do that you would never want to do to your own child.”
The Gills started with about 50 hours a month care from Jack & Jill nurses, to get them up and running. They were also waiting for some night cover from the HSE, which, Deirdre says, “took a long time to get sorted and Jack & Jill really stepped up during that time and carried the load, which was fantastic”.
The charity also provided extra support when Deirdre was suffering back pain while pregnant with their youngest child, Lachlan, now aged two. She was finding it difficult to cope with all the lifting involved in Saoirse’s care.
A huge relief to the family is the news that Jack & Jill have extended the age eligibility for their home nursing to age six. Otherwise, when Saoirse turns five this November, they would have faced the prospect of losing this familiar and flexible lifeline.
When Jack & Jill was set up more than 20 years ago by Jonathan Irwin and his wife Mary Ann O'Brien, in memory of their son Jack, care was offered to parents of children from birth to four. This was later extended to five and, despite the financial challenges of operating in a pandemic, the charity has now committed to providing care up to age six.
There are 72 children supported by Jack & Jill who turn five this year and who will benefit from this age extension, according to the foundation's CEO, Carmel Doyle. There are also children who started their extra year in 2020, through a pilot scheme of raising the age to six, who will continue to receive care until their sixth birthday later this year.
The charity is currently working with the families of 374 children, aged from birth to five years. And its upcoming Incognito art sale is one of its biggest annual fundraising events.
Having the age extended is “incredible”, says Deirdre, who knows families with children slightly older than Saoirse who no longer qualify for Jack & Jill assistance.
“The other system, on the other side, is a bit more stringent and strict,” she says of the HSE home care service. They currently have a night nurse two nights a week from the HSE and she says they have been very lucky in having the same nurse for this all along, who has become “part of the family”.
However, when all Saoirse’s care comes from the HSE after she turns six, Deirdre expects that different agency nurses will be rotated to cover the hours they are granted. Whereas with Jack & Jill, the Gills are funded to hire nurses they know locally or who are friends of the family.
“You could get anyone and that scares me a little because we have been just so lucky with Jack & Jill. We have never had a bad nurse; we have never had a bad experience with a nurse. Everybody gets on so well. They know your family inside out; they are part of the furniture.”
Due to the unpredictability of her severe seizures, Saoirse needs a nurse with her 24/7, whether she is at playschool, visiting her grandparents or asleep in her bedroom.
“They are people you really trust. That makes a huge difference when you have people coming into your home,” says Deirdre. “It is so strange having different people in your house all the time. It is quite difficult at times, especially with kids,” she points out. To get that right as they have with Jack & Jill, “so that the benefits outweigh the uncomfortableness of having somebody in your home, is a really good service”.
But this invaluable assistance was something the Gills felt they had to manage without when the pandemic struck in March 2020
“In lockdown things got scary at first. We were doing shopping online and doing all the washing of groceries. We banned my parents from the house. We did everything we could,” says Deirdre. “We stopped Jack & Jill because the nurses were going into other houses. That was difficult because you don’t get the breaks that you would normally live for.”
There was no chance to switch off; no moment when she didn’t have to worry about Saoirse and could do something with just Tiernan and Lachlan, now aged six and two respectively, or take time out for herself. It was a matter of “constantly running on whatever you’ve got”.
However, they did phase back in use of the night nurse after a while. First at arm’s length, whereby she came in and watched Saoirse’s monitors from downstairs and would shout for Deirdre to go into her daughter if necessary.
“She wouldn’t go near Saoirse. It worked because she was never going to be a contact and we were never a contact for her. But I’d get a night’s sleep.”
Saoirse returned to playschool last September and, since she was going there with a nurse, the Gills were happy for that nurse to come back and do some Jack & Jill hours in their home. That is what is great about the organisation, says Deirdre, “it’s so flexible”.
That is the only nurse they have used at home during the day so far through the pandemic.
“I still think the cases are that bit too high.”
After the post-Christmas lockdown, they decided to allow Saoirse to return to playschool when it reopened in March.
“We have tried to keep her going as best we can because she gets so much from it. She is a different child when she gets the chance to interact with peers.
“During lockdown she was quiet; there was not so much buzz out of her as she was sitting at home every day.”
Saoirse is the only child in the Republic with this condition, as far the Gills know, but they have made contact with a similarly affected family in the North.
Generally a happy and very relaxed child, Saoirse loves people, says her mother. She also enjoys the company of her pet dog Rusty, a dachshund, who frequently sits on her lap.
“She never gives out and she is really robust. She is non verbal but makes really nice sounds and she makes lovely eye contact. If she has got your eyes, you are not looking anywhere else.”
Her severe seizures can occur daily, or every few days, needing medication to try to stop them or sometimes an ambulance must be called. The convulsions can be so violent that she fractures her fragile bones.
“It’s awful. You may not know for a couple of hours and then she’ll be crying. The first time it happened I didn’t know. I brought her to Temple Street and she was crying and they thought she was just sore after the seizures.”
But Deirdre knew there was something else wrong. X-rays showed she had fractured both a leg and an arm.
Having a limb in a cast can lead to a really bad cycle because the pain of the fracture means she is more likely to start seizing and the casts have to be made in such a way that they can be taken off if that happens.
“If she seizes in them, she ends up with massive pressure sores. The heel of her foot went black because she had a sore from the cast.”
Although very soft natured, Saoirse also has a “wicked spark”, adds Deirdre, especially, like siblings everywhere, when it comes to her brothers.
“If the boys fall over, she will laugh her head off. Or if the boys are having a tantrum and being told off, you will see a smirk starting to show on her face.”
- Jack & Jill expansion by the numbers
– 6 years is the new upper age limit for Jack & Jill home care
– 374 children with life limiting conditions currently being supported to live at home
– 72 children turning five this year will get an extra year
– €250,000 is cost to charity of providing the extra year
– €4m is Jack & Jill's annual budget
– 20 per cent of budget comes from HSE, rest is raised by the charity
– €16 donation buys one hour of home nursing
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