Up the Hill for Jack & Jill (&Tom & Catherine & John & Jack)
“If someone was to tell me my story I’d probably be like ‘oh Holy God, I can’t believe it’.”
In the first six years of Tom O’Leary’s life, he has been admitted to hospital 56 times spending at least ten days in hospital each time. But, born with a heart condition and an extremely rare chromosome disorder, it was a miracle that Tom made it through pregnancy at all.
Tom was Catherine O’Leary’s second pregnancy. It was trouble-free and, even though Tom had to be born early, by emergency section at Holles Street hospital, she and her partner John, the All Ireland-winning Dublin football goalkeeper, didn’t think much about it.
“Jack, his elder brother, was born four weeks early and healthy so when Tom was three weeks early it was just “right, okay, so you’re early, the usual.”
It was probably five hours later before I saw a picture of him, because I was in Recovery, and I thought he looked like Superman,” she says. “He had these big shoulders even though he was only 5lbs 14oz.” By the next day, with Tom in Intensive Care, Catherine began to realise that he might have serious health issues. “One of the nurses said ‘oh, his eyes are a bit far apart’ then someone else said ‘his ears are a bit low-set’ and I thought ‘what’s wrong with him?’”
When the doctor told Catherine and John that he wanted to order tests for Tom, the couple initially though he might have Down Syndrome. But they also knew that John carried a rare chromosome condition that was harmless for him but might cause health issues in his children.
Weeks later, the results of the genetic tests confirmed that Tom did, as they feared, have an extremely rare chromosome disorder.
“They didn’t know the extent of what lay ahead of us because in every other case the baby had died during pregnancy.”
“You know there are sick kids in the world but you never think it’ll happen to you.”
“Every day it was something else with Tom,” says Catherine. A cardiologist diagnosed him with Tetralogy of Fallot, a congential heart defect. “That meant he would have to have open heart surgery which wasn’t the best news to get.” But he couldn’t have the surgery until they managed to get his weight up to 5kg and because he was such a poor feeder that took ‘forever’.
From the time he was born in October 2010 through to March the next year, he was in hospital nearly all the time. He came out for Christmas Day and was so sick so he had to go back in on St. Stephen’s Day. “We did a solid four months in Crumlin Hospital then they decided to put in the peg so he could be tube fed.” Feeding him by tube got his weight up so Tom could finally have that heart surgery.
“At that stage, we didn’t know whether he’d ever be able to sit up, we didn’t know if he’d be able to stand, we didn’t know if he’d survive.”
“You know there are sick kids in the world,” Catherine says, “but you never think it’ll happen to you.” She remembers the day a cardiac nurse told her that they thought they might qualify for Jack & Jill hours. “I said, ‘what’s Jack & Jill? Who are they? I mean I’d heard the name but I didn’t know what they did.”
The nurse explained that Jack & Jill nurses provided flexible home nursing care. Catherine and John were so used to having to do everything on their own that they weren’t sure how anyone could help. “But when Sinead came out to meet us, everything changed.”
‘Why do I need a break?’
Sinead Moran is a Specialist Children’s Liaison Nurse Manager with the Jack & Jill Children’s Foundation covering the Dublin area. She has worked for the charity for over 15 years both directly with families as a nurse and as a nurse manager arranging nursing cover for them. She met Tom, Catherine, John and Jack when Tom was about six months’ old.
“You’re coming into people’s homes,” says Sinead, “at a very difficult time when they are wondering where to go and what to do. I can say to parents ‘look I can offer you a break whether it’s a night’s sleep or hours during the day’. It’s time they can have for themselves, to go shopping, get their hair done or spend with their other children or their partner.”
Sinead says every family is different – some need nurses at night, some need day cover, some need a mixture of the two.
“Jack & Jill allow parents to decide how they want to use their nursing hours which is important because a lot of times control is taken away from them.”
The family can have anything between 10 and 80 hours a month based on an assessment of their needs. Catherine says that the flexibility of the Jack & Jill service is ‘brilliant’. “Instead of being told ‘oh, you can have a nurse on Tuesday for two hours’ – well, what if it doesn’t suit me?” Plus if something happens she can cancel and reschedule the nursing time.
At the start, many parents ask Sinead ‘why do I need a break?’ They are so used to just carrying on and doing all the caring that they haven’t even considered their own needs. It’s only when they start using the nurses that they realise that they have to take care of themselves too.
“A lot of the women who do the Jack & Jill hours are children’s nurses who are working on their days off,” she says. “The lucky thing was that the nurses that did the nursing for Catherine were people she had already met and got to know in Crumlin.”
An ‘angel’ in the family
Sinead: “Catherine and I got to know each other because I was her regular nurse. I couldn’t imagine not being in touch with Catherine. We could have had six conversations a day over the phone.”
Catherine. “We still do!”
And that comment of Catherine’s is revealing because Jack & Jill provides care to families with children who have ‘life-threatening or life-limiting’ conditions up to four years of age but the nurses often stay in touch for years afterwards forming close friendships. ‘They’re like family,’ Catherine says.
Sinead: “It’s often just guiding and advising when Catherine asks ‘Tom’s like this, what should I do? Should I go into hospital with him?’”
Catherine: “I think it’s just the reassurance.”
Sinead: “And that’s it, it’s just to give parents the confidence because they know the children better than anybody.”
Catherine: “John always calls Sinead our guardian angel – she came along and she saved us. I suppose the Jack & Jill nurses know they do an important job but, for us, the job they do is absolutely incredible.”
Sinead: “I love what I do. You come into homes and you offer something and you see the difference.”
“There’s nothing like homecare”
It was important to Catherine that she could get the right resources so Tom could spend less time in hospital and more time at home where she could look after him with the help of Jack & Jill.
“There’s nothing like homecare. Every time he goes in to hospital,” she says, “I have to stay with him 24 hours a day, sleeping on the floor beside his bed. I can’t move even. If I want to go to the bathroom or to grab a sandwich I might call Sinead and say could you come in for an hour? That hour is priceless because you need a break. Even if I can go home just for an hour or two. It’s vital to get out of there for your head. You mightn’t see one person to talk to all day. It’s quite a lonely job.”
When you start to understand that that looking after Tom is a 24-hour a day, 7 day a week job then you realise how precious a break is to mothers and fathers like Catherine and John.
“When we got married, we had a Jack & Jill nurse with us. She took Tom home so we could enjoy the evening with friends and family – just something normal, something that everybody else takes for granted.”
Sinead: “Meeting and getting to know families at the most difficult time in their lives is very humbling. I consider it a privilege that families allow me to come into their home and help support them as best I can; as best we can as a Foundation.”
Catherine: “You know we had a cardiologist appointment last month and he said to me ‘how many times do you think he nearly died on us?’ and I said ‘I don’t know’. The funny thing was I don’t think I realised at the time.”
Happiness & sadness
Sinead is clear that it is the couple’s willingness to try out new methods and their determination that Tom should not miss out that makes all the difference.
“Tom is where he is because of his parents and his brother Jack,” says Sinead. “They’ve done so much work with him over the years.”
“We were determined to get him to walk,’ explains Catherine. “We attached his shoes to our shoes so when we walked he walked. A parent of another child with additional needs made physio bars for us so Tom could pull himself up. He didn’t know what to do at first but we just kept encouraging him.”
But it’s important to the family that his elder brother Jack’s needs don’t get forgotten just because Tom has health issues. Sinead has researched the impact of having a brother or sister with a life-limiting condition. For siblings, “it brings happiness and sadness,” she says. “Children want to help with their sibling but they also want a normal family life. They don’t want to be angry and upset when Mammy has to go away to hospital and they can struggle with that,” says Moran. “Luckily, Jack had nana and granddad to look after him when Catherine and Tom went into hospital.”
“Every penny raised for Jack & Jill goes to families”
“Jack & Jill never asked us to give back anything,” says Catherine, “but I do think it’s important to explain what the charity is about because people don’t understand. I think the most important thing I learned was that every penny raised goes to the families. This is the really lovely thing for us to get across to everyone – all their money goes directly to the people that need it. It’s saved marriages, it’s saved lives.”
The O’Leary family have given great support to Jack & Jill by volunteering their time. John is on the Board of the charity and they are both active in fundraising events like ‘Up the Hill.’
Catherine: “I remember we went into Leinster House with another mother to talk to the Oireachtas (this was the Joint Oireachtas Committee on Health & Children in 2013). Tom was very young at the time. The other mother told her story and I thought I was going to suffocate I was crying that much. I was hearing someone else’s story but it was my story and I’d never heard my story and when I heard it I thought ‘is that me?’”
I spoke to Catherine and Sinead in the kitchen of the O’Leary family home in Swords. All the time we were chatting, Tom wandered round the kitchen island, playing with water in the washing up bowl, reaching up to drag whatever was on the work surfaces towards him (before Catherine quickly intervened) and once grabbed and held my hand in his. A boy who might never have made it to his 1st birthday who can now sit up, stand, walk and enjoy life thanks to his family and support from Jack & Jill.
Find out more
‘Up The Hill For Jack & Jill’, the Jack & Jill Foundation’s key annual fundraising event, will take place at over 13 locations across Ireland at 11am on Saturday 7 October. To register for the event or if you would simply like to donate, please click here.