Shelter from the storm of childhood illness

The parents of 10-month-old Shéa Conachy are beaming at the news that their son is "good to go" the following morning, just eight days after having had open heart surgery at Our Lady's Children's Hospital in Dublin.

The last time Kieran Conachy and Leanne Gallagher brought him here for a procedure they expected to be away from their Dundalk home for just one night but ended up having to stay in Dublin for six weeks. They recall sitting for 11 hours in the kitchen of the Ronald McDonald House – family accommodation in the grounds of the hospital – waiting for news from the operating theatre of their then three-month-old baby, who had suffered cardiac arrest after complications during surgery.

“You’re just waiting for the phone to ring,” says Conachy. “You try to talk about anything else, rather than ‘I wonder how he’s doing . . .’ but deep down in your mind you’re just thinking that anyway.”

"It had to be the longest day," agrees Gallagher, who remembers there were volunteers from the Bank of Ireland in cooking dinner for the residents that day.

“We just ate – although I don’t think I could eat much – and talked. Family were with us.”

There was no such trauma this time and Shéa, with an eye-catching head of sticky-up hair, is solemnly surveying all around him in that same kitchen, on a break from the hospital ward. His early discharge will also bring welcome news to another family; the one who can move into his parents’ bedroom upstairs tomorrow.

There is always a waiting list for the 16 en-suite bedrooms here, and four more in a house across the road. Priority is given to families living some distance from Dublin and who expect their child to be attending the hospital for a couple of weeks or more.

This “home from home”, run by a charity that is independent of the hospital, not only provides physical comforts and informal psychological support to parents emotionally drained from coping with a seriously ill child, but also cushions the financial blow.

They pay €10 a night for a room with up to four beds, so the sick child's siblings or other relatives can also come to stay. Most days meals are cooked by volunteers and, at other times, residents can help themselves to food provided free by corporate sponsors such as Kellogg's, Tesco, Keelings and Dawn Meats.

On their first visit to Crumlin, just hours after Shéa was born with a heart defect, Conachy and Gallagher got through €300 in a week, staying and eating in the hospital, before they were able to move into the Ronald McDonald House.

“When you compare it to the parents’ accommodation [in the hospital], this is a hotel,” says Conachy. There are TVs and wifi in the room.

“It’s silly little things like your own room and your own shower here: in the parents’ accommodation the showers are all communal,” explains Gallagher, almost apologetic for bringing up such details because, like most parents of sick children, concerns for herself are way down the list of priorities. “Coming over here, you can just switch off.”

Care and comfort

The house is here to provide the care and comfort parents need so that they can go and deal with their sick children, says Marian Carroll, chief executive of the Ronald McDonald Charities Ireland.

“It is so traumatic for them to have to come up from Cork or Kerry or Galway, or wherever it is, and be pegged into the hospital with a very sick child. If they don’t have somewhere to stay, that’s another trauma added into their lives.” In some cases, the mother may have given birth very recently.

On this midweek afternoon in February, the house is quiet and it is hard to believe that 51 people will be staying tonight. But parents like to spend the days in the hospital with their children; they receive texts to tell them if there are cooked meals waiting.

When they do come over in the evenings, one of the most valuable aspects is the “incredible support” they give each other, says Carroll. “They can sit down with another mum and dad who may not be going through the same illness, but they can understand how difficult it is.”

If a child dies, it is “really, really challenging” for everybody: staff as well as other parents. “You always know in the house when something has happened; you can just feel it,” says Carroll. But, mercifully, the vast majority of families leave intact.

The current, longest-stay family is about to go home after spending almost a full year here. “You couldn’t do that sitting on a bed or in digs down the road,” she points out.

Fundraising

It takes approximately €325,000 a year to run the centre, says Carroll, who does the chief executive job in a voluntary capacity. The former Mount Anville teacher first became involved 14 years ago through fundraising to build the house, which opened in November 2004. Another 45-plus volunteers, doing anything from cooking and cleaning to IT and building maintenance, help the four full-time staff and four part-time staff to keep the place going 24/7.

The first Ronald McDonald House opened in Philadelphia in 1974 and now there are nearly 350 in 62 countries. The biggest source of funding worldwide is what customers put in donation boxes in McDonald’s restaurants.

A small portion of the Crumlin house's administration costs is funded by the McDonalds corporation, which owns just 12 of the almost 90 outlets in Ireland that bear the name. The rest are franchises run by individual owners, including Carroll's husband, Ian, and they all support the charity too.

Fundraising is always ongoing and the big challenge on the horizon is to build a 50-plus bedroom house, at an estimated cost of €8-10 million, alongside the new children’s hospital planned for the St James’s Hospital campus.

“We haven’t signed on the dotted line yet but we will more than likely be their choice of provider for the new house,” says Carroll. “A lot of our energies are going into raising that money now, but at the same time we have to keep this place ticking over.”

Heart defect

Shéa’s heart defect was picked up during a scan in the 27th week of Gallagher’s pregnancy. He had hypoplastic left heart syndrome, meaning the left portion of his heart was not developed properly – a condition which occurs in up to four out of every 10,000 live births,

“We locked ourselves away for a few days,” says Conachy, “and then we came to the conclusion that whatever happened was meant to happen and it was just the way it was.

“And there he is,” he adds, nodding proudly towards his son who is now sleeping peacefully in the buggy as we talk in a quiet sitting room, with a tank of colourful fish and book-laden shelves across one wall.

Standard treatment for his condition, they learned, involves operations at “three days, three months and three years”, says Conachy. This should create a normal blood flow in and out of the heart.

Not knowing about the Ronald McDonald House at the time, Conachy and Gallagher moved out of their rented home in Dundalk to live with Gallagher’s parents in the town, selling any furniture they owned to save money for what lay ahead. Neither is employed, and they needed to replace their old car just to travel up and down to Dublin.

Just three hours after his birth by planned Caesarean section at the Rotunda Hospital on April 14th last, Shéa was transferred to Crumlin. But, weighing 2.36kg (5.4lb), he was deemed too small for the planned Norwood procedure.

Instead, straight after being baptised on April 16th, he had a “hybrid” procedure: a relatively recently developed alternative first stage of treatment. If he had been born five or six years earlier, doctors said, nothing could have been done for him.

“We didn’t realise how sick a baby he was,” says Gallagher.

After last July’s scare, Shéa had the Norwood procedure done in August and now stage two of the treatment has been completed. Six weeks from now, he will finally be able to have the first of his childhood vaccinations and “start being a normal baby”, says Gallagher.

They haven’t been able to take him to family gatherings for fear of him contracting a bug that could have been very damaging. They bought a buggy with an extended rainhood that pulls down low over him to discourage people from reaching in to touch him.

“I am sure people thought ‘the two of them are just mad’, we were so paranoid,” says Gallagher, who can laugh about it now.

They were so grateful for their positive experiences at Crumlin, they fundraised by taking part in Dundalk's Santa Run and organising a concert featuring Brendan McCahey, winner of RTÉ's The Voice. They split the proceeds between the Ronald McDonald House and the hospital's new heart centre, which opened at the end of 2013 after parents raised €4.5 million to build it.

“We will do something every year, just to give back,” says Conachy, although they hope, all going well, it will be one and a half to two years before they will be returning to the house, when Shéa is due his next round of surgery.

Since their son came out of ICU two days ago, the couple have been taking turns to sleep with him on the ward. Who’s staying with him tonight?

“Me,” says Conachy, turning to Gallagher with a smile. “Because you’re packing.”

For more information, see rmhc.ie

We're sitting in the waiting room; it's just soul destroying'

Wendy Costello is all too familiar with the trek to Crumlin hospital from home in Bansha, Co Tipperary. Her daughter, Niamh, who is 15, suffers with chronic juvenile arthritis and is treated there every second Monday with a low dose of a chemotherapy drug administered through a drip.

It takes them two hours to drive up “on a good day”, says Costello. They have to be in the hospital by 8am but may just sit there until 2pm, waiting for the drug to be made up, after Niamh’s bloods have been checked and until a day bed becomes free.

“We’re sitting in the waiting room on a chair, the two of us; it’s just soul destroying,” says Costello, a cofounder of iCAN Ireland, a support network for parents caring for children with arthritis.

Missed schooldays Now that Niamh is in fifth year, Costello is also concerned at the number of schooldays she has to miss to travel for treatment.

It would be much easier if the drug, Tocilizumab, could be administered at their local South Tipperary General Hospital in Clonmel but Costello says she was told it was simply too expensive for that hospital to buy in. (At the time of writing, the hospital has not responded to a query from The Irish Times seeking clarification of this.)

There is little public awareness of the condition and Niamh, who has had to use a wheelchair in recent years, doesn’t like to talk about what is regard- ed as an “old people’s disease”.

“My friends and my family don’t understand: Niamh will be walking one day and in the wheelchair the next; and they just can’t get their head around that,” says Costello. “When she’s walking they presume she’s fine, but she’s not, she’s in constant pain.”

[ juvenilearthritis.ie ]