When Maria Waters from Castlebar, Co Mayo welcomed her third child in June last year, she already knew the baby had a heart defect and would possibly need multiple surgeries and long stints in hospital.
She knew it would be tough.
What she maybe didn’t realise straight away, in the middle of her worries, was just the toll having a critically ill sibling would also take on her older children, nine-year-old Rhianna and four-year-old Oisin.
“When Shannon was born she was immediately transferred to Our Lady’s Hospital in Crumlin, where she was diagnosed with a rare and complex heart condition that requires ongoing monitoring treatment and major surgery,” explains Maria. “And much as I tried to make it home to Mayo most weekends, it took eight months in there before we were allowed to come home with Shannon for the first time.”
And much as her older children were able to come up to Dublin to visit their mum and baby sister in hospital and stay at the adjacent Ronald McDonald House, they had to remain in Mayo for most of the time, with Maria’s mother caring for them when her partner was either at work or up in Crumlin with her.
“This was so hard on all of us,” Marie explains. “We were all worried about the baby, and on top of it I had to worry about how Rhianna and Oisin were managing without me, and feeling like I was missing out on so much with them.”
The mum-of-three recalls an episode in the hospital when little Oisin was up for a visit.
“When Shannon was only eight weeks old she went into cardiac arrest. Oisin was actually there at the time and ended up having to comfort me when I cried, something that just brought home how much this whole situation had made the tables turn. Here was my just-turned-four-year-old reassuring me Shannon was going to be OK, not the other way around.”
Having one ill child largely impacts other siblings too
The Mayo-based mum admits this past year has taken a huge toll on the whole family, but maybe mostly so on her eldest two children.
“Oisin, who was always such an easy and calm child, became aggressive and started acting out in playschool, something he has never done before. He even got physical with other children, while at home with my partner or my mum he was simply upset and inconsolable because he wanted me – and I wasn’t there.”
For her oldest girl, Rhianna, is was also hard having her mum be away, much as she also understood a little more of the situation than little brother Oisin did.
“What we first noticed, I think, when I had been away for a while, was that her schoolwork started to suffer,” Maria explains. “Up until now, Rhianna has never had problems with school, but with me away –and obviously being scared for her little sister too, her behaviour and personality completely changed, and she started acting out and becoming very cheeky too.”
On top of worrying about her family, Maria and her partner also started to realise their youngest daughter’s conditions brought with it financial worries too.
“My partner is self-employed, and with all the time he had to take off to be with me and Shannon those first few weeks and months, it didn’t take long for bills to start adding up,” she explains. “Even just being away from home so much, there were bills that came in that were missed and forgotten about, and suddenly we realised Christmas was just around the corner and it all started to look a bit bleak.”
The help came in the form of Cliona’s Foundation, whom Maria had only first heard of a few weeks before. This Irish charity works to support families of critically ill children, helping over 400 families across the country who have a child with a life-limiting condition with all kinds of non-medical expenses.
“I didn’t know what else to do at the time, so I applied to Cliona’s Foundation for some help, and literally two weeks I later I got a cheque in the post,” Maria explains. “It was honestly like winning the lottery.”
Cliona’s Foundation
This is what Terry Ring, who set up Cliona’s Foundation in memory of her daughter Cliona Ring, had to say:
“Primarily, it’s purpose is to help alleviate the non-medical expenses Irish families automatically incur whilst looking after a child with a life-limiting condition. I was struck by the number of families I met during trips to hospitals with Cliona who were struggling financially with these hidden costs, compounded with the devastating news given to a family regarding their child.”
Having a sick child affects an entire family and family economy, Ring explains.
“There are huge difficulties within the home which often go unrecognised. Siblings at home while one or both parents who are in the hospital need to be looked after and often, quite suddenly, these “shadow children” find themselves outside of the comfort of home as they knew it. This can have repercussions for both the children and the parents. I know that on average, the daily non-medical costs incurred by a family of a critically ill child are over €200 between accommodation, food, car parking etc.”
What the future holds
After eight months in Crumlin, baby Shannon was finally well enough to be transferred to the hospital in Castlebar, meaning a far easier everyday life for everyone. And not long after, she was allowed to come home – and for the first time in a long time, the family of five could enjoy a little bit of normality.
“It was amazing,” Maria explains. “Even just being able to go to the supermarket and do a normal week’s shop, it was just something I hadn’t done in so long. And much as Shannon still needed a lot of care and attention, we were home, and I was allowed to spend time with and be there for Rhianna and Oisin properly too.”
Being home again had an immediate effect on the family.
“Since I came home, Rhianna’s school work got back and track and she is as good as gold again, no more problems or attitude.”
And even though there have been stints back to Crumlin with Shannon, and the family know they are facing a long road ahead with more surgeries and possibly a heart and lung transplant when Shannon is older, for the moment, they are just happy to be home and be together.
“Now that we are all at home again, myself or my partner will try to bring Rhianna and Oisin somewhere fun at the weekend,” Maria explains. “It’s hard to get the time to all do things together, but we try, and we have applied for nurses to come in and help us out for five hours a week, meaning we would have some time there where we would get to focus solely on Rhianna and Oisin.”
For more information or to make a donation to Cliona’s Foundation so that they can continue to help families like Maria’s, please visit their website at Clionasfoundation.ie.
