Tuesday, April 18, 2017

Ronald McDonald House is home away from home for families with hospitalised kids By Deirdre Reynolds

Ronald McDonald House provides ‘a sense of normal’ for families with children confined to hospital in Dublin, writes Deirdre Reynolds.

When Sandra and Brendan Ryan discovered their baby daughter needed life-saving heart surgery, life as they knew it changed for good. Already parents of two little boys, the Cork couple welcomed baby sister Kate to the clan last December, after a pregnancy scan revealed she had hypoplastic left heart syndrome, which would require a string of gruelling surgeries to repair. “Immediately, on diagnosis, they said you’ll have to deliver in Dublin,” said mum Sandra. “That didn’t work out in the end. She was stubborn; she wanted the Cork birth cert!” Two-and-a-half hours away from their Carrigtwohill home, the devoted couple have since maintained a 24-hour vigil by their youngest child’s cribside at Our Lady’s Children’s Hospital in Crumlin, something they say has only been possible with the help of the neighbouring Ronald McDonald House. “Essentially, she has half a heart,” explained husband Brendan, who is a Garda. “She has no left side to her heart. The bigger she gets, the more pressure it puts on her heart and her arteries. “We were, I suppose, lucky and unlucky that we knew a couple whose daughter had the exact same condition and they told us about Ronald McDonald House. “It’s like a little comfort blanket for us, really. It’s somewhere to go at the end of the day.” Opened in 2004, the redbrick building nestled in the heart of Dublin 12 serves as a home away from home for more than 300 families from throughout the land every year. Despite being just metres away from the heaving children’s hospital, inside, it couldn’t be more different. “In the hospital, it’s very stressful,” agrees Edel O’Malley, volunteer CEO of Ronald McDonald House Charities Ireland. “You can imagine: You’re at the bedside and everything is beeping or there’s lights or there’s noises. “Then you have other people’s activity going on around you as well on wards. “Here, it is much more like coming into your aunt or your uncle’s house — coming home. The parents give each other a huge amount of support, because they are on the same kind of journey. The child mightn’t have the same issues, but they have the same stresses and same sort of worries and concerns. “At the moment, our average length of stay is running at about 24 nights for a family, but we have had people who have spent over 600 nights, nearly two years solidly from their child’s birth. “About 10 or 12 families a night are still knocking on the door to see if they can get in.” When their son Denis was diagnosed with a rare congenital heart disease called Shone’s Complex at birth last October, first-time parents Jenny Jordan and Declan McClair from Meath were forced to dip into their life savings to stay close to him in the capital. Six months on, just like the other parents and grandparents staying at the house, the couple make a €10 daily donation to the organisation, which goes towards the true cost of €55 a night to house a family. “They call it the rollercoaster,” said Jenny of her son’s condition. “You fix one problem and something else arises. One in 8,000 babies gets it and he was one of them. It’s a big shock when you’re in that situation, where you don’t know what you’re going to do, where you’re going to stay. “We spent about €800 the first week we came here.” With anxious mums and dads from across the country clamouring to secure one of the 16 bedrooms in the house, which receives no Government funding, geography is just one of the deciding factors in who gets one of the coveted quarters, which can sleep up to four and has a private bathroom and shower. Fundraising is underway to gather the €16m needed to build a new supersized Ronald McDonald House at St James’s Hospital in the city. “We would love to accommodate everybody,” added Ms O’Malley. “We just don’t have the facilities to do it. “How far away you are, how long they predict the child is going to stay, if there are other siblings in the family unit, they would be the main kind of criteria. “The new house will have 53 bedrooms. “It is going to be a big building in an effort to try and accommodate as many people as possible. “Do we think it will take all families? We hope it will.” Although home is less than hour’s drive from the hospital, as doctors continue to battle to better baby Denis’s life, for Declan and Jenny from Ballivor, the service has been a lifesaver of a different kind. “When you have a sick child, half an hour commute is bad,” he argued. “We’ve seen it over there with Denis, they act so fast. Several evenings we’re over there in the house; next thing, the nurse will ring us to say the cardiologist wants to have a chat with us and can you tip over there. “You’re getting out of that bubble of being in the hospital the whole time. Your head would be melted if you were over there the whole time. “All you’re seeing is people sad the whole time; it does drain you.” Home-style meals, laundry facilities, squishy couches, a big screen TV, and limitless toys for the little ones are just some of the home comforts affording the country’s most embattled families a sense of normality in the most abnormal of circumstances, and all completely free of charge, due to big-hearted Irish companies and volunteer staff. “It’s really made a difference not having to worry: ‘We’ve been in hospital all day… we have to eat something’,” dad-of-three Brendan said. “There’ll always be something in the fridge. “No matter what’s going on in your own scenario, there’s never doom and gloom. People do have bad days, but you never get the air of sadness. “It’s a nice place to be, in the worst possible circumstances.” More than anything, the Carrigtwohill couple say staying at Ronald McDonald House has given them the opportunity to just be parents, both to Kate and her brave big brothers, Conor, 7, and James, 5, not to mention check in with each other. “When Kate is on the ward, we really are like ships in the night,” he went on. Sandra would be here and I’d be below minding the lads and then we’d cross over. “When the boys are off at the weekend, and I’m off, then it does give us a chance to come together as a family, which is great. “When they get up here, you can make it all about them, because they love coming up.” Sandra adds: “A place like this allows you to parent your other children… because when your child is in ICU, you don’t parent, you flitter in and out and you kind of sit there. “It gives you a sense of normal in the most abnormal situation and it becomes your normal. “You find yourself going out for day trips and saying: ‘We’ll go home.’ “I went to Cork two or three weeks ago and it’s almost like that was the abnormal for me and this was the norm. This was the norm, because you have a sick child that’s here and you want to be near her. “I was actually relieved coming back up.” See www.rmhc.ie for more. Irish Examiner Ronald McDonald House Charities