For families of critically ill children, a home by hospital can be a lifesaver

For families of critically ill children, a home by hospital can be a lifesaver

Few things in life take more of a toll on a family than having a child critically ill in hospital — but, in the absence of State aid, there are some charities that can give them a second home, says Joyce Fegan.

If you live outside of Dublin and your child gets sick, requiring critical care in a major city centre hospital, the last thing you would expect to be worrying about as a parent is the cost of fuel, the price of parking, or how long you will need to stay in a B&B.

Yet these non-medical concerns often cause the most stress for families, placing massive strain on relationships at an already difficult time.

In 2015, Ade Stack opened Hugh’s House in Dublin’s north inner city after her eight-month-old son Hugh died. While the businesswoman was lucky to live close by in Malahide, she had seen firsthand how parents of sick children from outside of Dublin struggled with the day-to-day realities of life.

Maria Brennan, manager of Hugh’s House, explains.

When Hugh was in hospital, she would have witnessed parents sleeping on floors, sleeping in cars, marriages breaking down, you know the struggles of daily life for them, while she was flying in and out to Malahide when she could, or flying home to have a shower, or to do the normal things we would do.

Hugh’s House comprises two houses just off Dublin’s Mountjoy Square and can accommodate up to 14 families while their children are being cared for in hospital. There is no charge to stay, and some families have stayed for as long as two and a half years.

There are a handful of other similar houses that families can stay in while a child is receiving critical care. However, with a high demand and a very small supply, many resort to B&Bs, if not long commutes or sleeping in their cars to keep already high costs running even higher.

“If you get to a Dublin hospital, they take your baby or your child, and then your baby is in this bed and you say: ‘Where do we stay?’,” says Maria. “And that’s when they say: ‘There are the B&Bs, a list, pick one.’ So you can imagine the mayhem and the madness, that’s why so many parents are in so much distress.

“They have to link in with social workers. They’re fabulous. They’ll link in with me and tell me about a family that needs accommodation and ask is there a room available. Everyone comes through social workers.”

The two houses belonging to Hugh’s House accommodate seven parents of premature babies and seven parents of children who have been in an accident or have experienced a trauma of some kind.

“We have a drowning accident, a bicycle accident, and a head trauma at Easter,” says Maria. “We have a little four-year-old who has had two heart attacks. We had a six-year-old who had a stroke. They’re our no-discharge dates. So when they come, I don’t know and they don’t know whether they’re going to be a month, two months, six months, or a year.

“We had a family where the dad was giving the son his kidney, so we had the mammy for three weeks. We have all sorts of different stuff. The longest anyone has stayed is two and a half years.”

In the house for parents of premature babies, the staff have seen all sorts of miracles pass through, as is shown on the wall of photos by the kitchen table. One picture shows an extremely small premature baby and next to it, is a photo of him a year later celebrating his first birthday at home with his parents.

Babies have been born as early as 22 weeks, and survived.

“They’ve all been 22-, 23-week-old babies and one baby weighed 420g and the smallest we’ve had is 390g, and they have all survived,” says Maria.

The youngest baby that has survived is 22 weeks. The average age of a premature baby is 22 to 29 weeks old.

She says hundreds, perhaps thousands of families have passed through the two houses since the charity opened in 2015. Families will relay some of the costs they were experiencing before they got into Hugh’s House, says Maria. Some were paying €200 a week in fuel and upto €50 a day in parking. For accommodation, families were regularly quoted €200a night.

Once you get into Hugh’s House, though, all of that is taken care of. There is no more commuting, and there is a parking arrangement with a local garda station, where parents give the registration details of their vehicle to an officer.

The moment a parent arrives in Hugh’s House they are shown the kitchen, a focal point because of the importance of fridges and freezers when it comes to breast milk.

“From the minute you walk in here, I bring you in and I say: ‘This is your kitchen,’” says Maria. “Then I show them the fridges. There is a communal fridge. I buy cereals, bread, milk, ham, cheese and eggs. Then this fridge over here you have the name of your room is on the shelf, so if you want to buy a certain butter or cheese and you use that shelf.

“Then I bring them up to their room and I show them their room. The beds are double, king and super king, depending on the room, and we have travel cots and sofa-beds, for a granny or another child visiting.

“You have washers and driers for your laundry. I buy the powder, everything is supplied. There are cookers and people can make a meal. We’ve freezers for your milk, this [the breast milk] is better than gold.”

The house runs like an ordinary home with everyone tidying as they go and cooking for one another in the evening as parents share stories of their day. There are also volunteers from large corporations, and they have provided essential help to Maria.

“We have volunteers that come in who hoover and clean bathrooms,” says Maria. “Our big bills would be electricity and gas because we like to keep the houses warm. We have companies who come in and volunteer and I just say: ‘Cook me a nice meal for when they come home at night.’

“Then I’ll send a text saying there is food in number 43 or 44. Some volunteers do nice Thai curries or they bake. They go all out. Or they help with painting or any other jobs I need doing.”

While demand is high for a room in Hugh’s House, the plan is simply to keep going as they are going, and if an opportunity came up to get another property, they would definitely pursue it.

Right now, Children in Hospital Ireland, an independent charity established in 1970 to promote the welfare of children in hospital and their families, is looking at the non-medical costs that parents face. The charity is currently carrying out a survey.

“The purpose of this research is to uncover the non-medical costs associated with having a child in hospital and to assess the financial supports available to families,” says a spokeswoman for the charity.

“This survey will ask about out-of-pocket expenses including travel costs, meals, overnight stays, care of your other family members, and whether any income has been lost. The objective of the research is to make recommendations on how to better alleviate the financial burden currently placed on families.”

The survey is aimed at parents or carers of children who have had frequent or a prolonged stay in hospital in the past 18 months.

Ronald McDonald House is another charity that provides accommodation to families who have children in hospital in Ireland. They provide a service to Crumlin Children’sHospital, accommodating20 families a night.

They have a main house with 16 en-suite bedrooms and a smaller house with four en-suite bedrooms. Each room has its own freezer and fridge space and there is also a playroom and sitting room. There are three kitchens and a laundry, and parking for up to 18 carsbetween the two houses.

Marian Carroll, the charity’s volunteer CEO, said they are completely reliant on charity fundraising and donations.

“We have never received any State funding — for either the capital cost (€3.75m in 2004 and €750,000 2010) or running costs of €500,000,” says Marian. “We have one full-time member of staff, six part-time house staff and five part-time charity staff. I have been the CEO on avoluntary basis since 2004.”

They also rely on a large team of volunteers on a daily basis. Individuals and companies cook fresh meals for the resident families every single day. Marian says they have cared for 3,900 families since they first opened their doors.

“We prioritise families who travel the furthest and whose children require long-term care in hospital,” she says. “As a result, many of our families have children who are treated for cancer, heart conditions or have children in ICU. Our criteria is a family requiring accommodation, distance travelled, and length of stay, rather than illness.”

While there is a fee of €10 a night, no family is turned away, regardless of their ability to pay. Financial aid is reviewed by management. The charity has planning permission to build a new53-bedroom Ronald McDonald House beside the new children’s hospital.

“We are currently raising the €19m required to build and fit out this house,” says Marian. “Expected opening date 2023.”

We'd have been lost without home away from home'

Mary and Shane Horan are parents to baby Róisín, who was born prematurely at 29 weeks last June.

While their other daughter was at home in Mayo being minded by family, Róisín needed round-the-clock care and they needed to be by her bedside. In order to do so, they either needed to pay for weeks upon weeks of hotel accommodation in Dublin or drive to and from Mayo every day.

They were put in contact with Hugh’s House, a charity in the north inner city that provides emergency accommodation to the parents of critically ill children, free of charge.

“She was 11 weeks premature but she was about half the size a 29-week-old baby should be,” says Mary. “She was 1.5lb. She was set up on a load of machines.”

For families of critically ill children, a home by hospital can be a lifesaver

By the time Róisín was 33 weeks old, she was weighing 1kg. However, in the early days, the baby’s lungs collapsed.

“Her lungs collapsed and she had to go on a ventilator,” says Mary. “She was on a ventilator when she was born, but she had to go on a high frequency ventilator which literally did all the breathing for her and if you were to look at her belly, her belly was shaking all the time and therefore, she wasn’t able to have any milk or any feed.”

Before and even after Róisín’s birth, Mary and Shane were unaware of a service such as Hugh’s House. Caring for their baby, who had to remain in hospital for weeks, meant travelling up and down from Mayo. “We didn’t know anything like that existed,” says Mary.

The social worker got us in contact with Hugh’s House and thankfully on the Friday I was discharged from hospital we were able to go to Hugh’s House. I suppose there was a sense of relief and comfort when we arrived outside the house.

"It was very emotional in the sense that we had to leave Róisín. It was the first time I had to leave hospital after having her. But I walked in the door and Maria [the house manager] was there and she had the pot of tea on straight away and it just felt like home.”

Aside from the expensive logistics of finding short-term accommodation in a capital city and being hundreds of miles from home, there was the issue of breast milk for when Róisín was strong enough to be fed.

“Another element of having a premature baby is you need the breast milk,” says Mary. “It needs to be pumped and if you’re pumping all the time you need access to your fridge, you need access to your freezer. It’s just the little things that make this journey a little bit easier.”

There are several fridges and freezer in Hugh’s House, including one dedicated to storing pumped breast milk belonging to the new mothers who are staying there.

“It’s amazing,” says Mary. “It’s the comfort of home without being at home. It is just so emotionally and physically and mentally draining that it’s such a breath of fresh air to walk into a place that we can all call our own, our own room, that feels so homely and so comfortable.

“It’s then the chance and the opportunity to talk to the other parents in the house and say: ‘How’s your girl today or how’s your boy today?’ or ‘We had an OK day and such and such’. Being able to share the stories with each other, have a bit of comfort, have a bit of home away from home — we’d have been absolutely lost without it.”

Róisín has now been transferred to Castlebar Hospital and her parents have been able to return home.

Charity helps Kerry family maintain vigil at their baby’s bedside in Dublin

September marks the ninth month that Jenny Pye has been living in Hugh’s House, in Dublin’s north inner city, as her baby son Jake receives critical care.

If it were not for the free accommodation provided by Hugh’s House to parents of critically ill children, Jenny would be making a 300km round trip to and from Tralee to be by her son’s bedside every day.

Jenny already has a five-year-old daughter, Sadie, who lives at home in Kerry, where her partner, Alex O’Donovan, remains to work and maintain a sense of normality for the family. Nine months ago, the family’s life changed when Jake was born with his organs outside of his body. He was given only a 5% chance of survival.

“Jake was diagnosed with a rare birth defect, which meant a lot of his organs were growing outside his body,” says Jenny. “His condition often has a very poor outcome. Jake has been in hospital in Dublin since he was three days old.

Jenny Pye and Alex O’Donovan, with daughter Sadie and baby son Jake. With no State support, the family rely on Hugh’s House for accommodation near hospital
Jenny Pye and Alex O’Donovan, with daughter Sadie and baby son Jake. With no State support, the family rely on Hugh’s House for accommodation near hospital

“When we first heard about Hugh’s House, we didn’t realise what it would mean to us. We were told things were so serious with Jake that we may have only been there for a week.

“We are now there nine months later and thankfully, we have been able to spend our time focusing on our son, not having to worry about where to stay. I honestly don’t know where we would be without Hugh’s House. It has been a lifesaver for us.”

While some parents may only stay for several weeks at the house, Jenny is one of the longer-term mothers using the service. While she maintains a bedside vigil for Jake, something she believes is helping him thrive, the couple rotates between Kerry and Dublin, but only see each other on the road as they pass one another in Tipperary.

“We wave to each other in Birdhill, Co Tipperary,” explains Jenny.

This happens when Alex is coming to Dublin to visit Jake while, at the same time, Jenny is travelling south to spend time with Sadie.

Alex works on his laptop while Jake is resting in the hospital

The couple receives no State funding, despite making two 300km round trips to Dublin each week as they rotate care for their children, an arrangement which is now in its ninth month.

Jenny’s day revolves around nursing her baby at Children’s Health Ireland at Temple Street from 8am every day, to then returning to her room at Hugh’s House in the evening to call Alex and Sadie in Tralee and report on any progress.

And despite the challenge of caring for their existing family, while travelling cross country and managing a mortgage on one salary, their son has beaten the odds of survival.

Jenny thanks the “wonderful” team at Temple Street, as her son’s skin continues to grow over the cavity through which his organs protruded. However, the realities of life are knocking as Jenny’s maternity leave is now over and she is neither receiving pay nor does she qualify for a carer’s allowance as her son remains in hospital.

She will qualify for the €300-plus monthly Domiciliary Care Allowance only when Jake is discharged from hospital and caring for him in their Tralee home begins. The allowance is only paid when a child is at home and not when a child is a long-stay patient in hospital.

With no State support and only a charity to rely on for bed and board, the Kerry family has been sustaining all the extra expenditure on one salary, while paying their mortgage, which was taken out with two salaries in mind. Jenny said she does not know where the family would be without the support provided by Hugh’s House.

Jake remains in Temple Street and so Jenny and Alex continue to use their room at Hugh’s House.

'Without this place we would have nothing — it’s an absolute godsend’

A new mother with a seriously ill baby tells Joyce Fegan how Hugh’s House has helped the family cope Since Nicole Curtis’s daughter Willow was born in early August, she has been able to hold her just three times.

“I’ve cuddled her three times and my partner has cuddled her twice,” says Nicole. “My first time was for 10 minutes, my second time was for 20 minutes, and my third time was an hour. In four weeks it’s less than two hours hugging your child, which is quite hard.”

Willow was born in the Mater Hospital at the beginning of August at just 28 weeks’ gestation. She is in the neonatal intensive care unit in the Rotunda hospital due to chronic lung disease.

Nicole and her partner Tom both live in Limerick and are currently staying in Hugh’s House. Without this free service, they would be paying €1,000 a week in accommodation or travelling up on the train every day from Limerick to see their baby.

“We get up here and we might have breakfast,” says Nicole. “We spend the day down at Willow, looking through the glass. At the moment we are not allowed touch her and stuff because she’s not liking being handled, but we’ve cuddled her. It’s an amazing feeling when you do cuddle them.

“Our day is spent just looking at her. We might go down to the staff canteen or go for a little walk by the Ilac Centre, that’s probably the furthest we’ve gone.”

Nicole and Willow have fought very steep odds from the beginning, as Nicole has congenital heart disease. This meant she was placed under regular monitoring since she found out she was pregnant, something she was always warned against because of her own illness.

“I’m 32 years of age and I have congenital heart disease. I have five major defects, so I was always told: ‘Don’t have children, don’t get pregnant.’

We actually had asurprise this year when we found out we were pregnant as basically we didn’t expect to get pregnant and when we found out we were we had to go to our local hospital.

“They were kind of a bit bamboozled because they wouldn’t have been able to deal with a congenital heart and a pregnancy. So I rang my cardiologist in Dublin and he asked meto come up. They told us to think about it seriously because there were a lot of risks.

“We were told there was a 77% chance of miscarriage through the pregnancy and also a 20% chance of cardiac arrest during the section because of my heart. But we still decided to go ahead and we just said at least we tried if something happens it happens, if it doesn’t it doesn’t, but at least we can say we tried.”

Her pregnancy began with a fortnightly scan in the Dublin’s Rotunda hospital under the “amazing” care of consultant obstetrician and gynaecologist Jennifer Donnelly.

“From day one she was positive and she was like: ‘We can do this. It’s going to be a long road and a hard road, but we can do this,’ ” says Nicole.

However, at week 16 the scans became weekly due to the growing pressure on Nicole’s heart, meaning she had to travel with a companion on the train to Dublin every Wednesday to get checked.

“I was told I’d always have to have someone around me or with me, just in case, because I tend to turn and when I turn I turn quickly,” she says. “I could be fine one minute and the next minute I could be on the ground, so they were worried.

Nicole Curtis, from Ardnacrusha, Co Clare, who gave birth four weeks ago in the Rotunda Hospital. Her daughter, Willow, has been in the neonatal intensive care unit since her arrival, and Nicole and her partner have been staying in Hugh’s House, which provides accommodation 365 days a year to the families of children who are long-term in-patients in the maternity and children’s hospitals and live outside the Dublin area. Picture: Moya Nolan
Nicole Curtis, from Ardnacrusha, Co Clare, who gave birth four weeks ago in the Rotunda Hospital. Her daughter, Willow, has been in the neonatal intensive care unit since her arrival, and Nicole and her partner have been staying in Hugh’s House, which provides accommodation 365 days a year to the families of children who are long-term in-patients in the maternity and children’s hospitals and live outside the Dublin area. Picture: Moya Nolan

The weekly scan continued until week 25, when more changes were detected. Nicole’s oxygen levels and blood pressure had dropped considerably. She was hospitalised so she could be under 24-hour medical surveillance.

While a Caesarean section was imminent and necessary, doctors wanted to wait until 28 weeks’ gestation, to when there is a very high chance of survival for the baby.

“We were stalling and stalling until 28 weeks [for the section] because the Rotunda has a success rate of babies [surviving, having being born] over 28 weeks. They were saying: ‘Let’s try and get to the 28 weeks,’ ” says Nicole.

“At 28 weeks, they did a scan and the baby’s stomach was measuring small and they checked the placenta and the placenta was starting to harden, so they were saying the baby wasn’t getting the nutrition that she needed and my oxygen levels were dropping so it was time for her to come out. Between the two of us, [the section] needed to happen soon.

“They did the section in the Mater. They had a cardiac team, the theatre team, the gynae team, they had an an aesthesis team and they had the paediatric team with the neonatal team from the Rotunda over for the baby.

“They couldn’t have done enough. And they also got HR in so they could take photos because it being so unusual to have a baby born in the Mater, because usually they’re born in either the Coombe, Holles Street, or the Rotunda.”

Willow was born on August 7, and everything appeared to be OK until a few days later when she took a “really bad turn”.

“At the moment she has chronic lung disease,” says Nicole.

“Unfortunately, she took a really bad turn after a few days because her lungs were only developed to a 25-week-old baby even though she was longer in the womb. She needed medical attention immediately. They didn’t think she would make it through the night, but she did and she’s still here and she was on a ventilator. She’s in the Rotunda now in the neonatal intensive care unit.”

While Nicole and Tom remain in Hugh’s House and their baby is in intensive care, the future looks bright with the hope that Willow will grow out of the lung disease and go on to lead a happy healthy life.

“The future can be good,” says Nicole. “One doctor said she might have asthma when she’s older but that’s it.”

The couple describes the care and support from Hugh’s House as a godsend.

“This place has just been an absolute godsend because we were pricing to stay in hotels,” says Nicole. “During the pregnancy we thought everything was fine with the baby so we thought we would just be a week in Dublin, maybe two. Then we were told we were going to be staying a lot longer.

“We were looking at about €1,000 a week on Booking.com just for accommodation and that doesn’t include food or anything and we couldn’t afford that. Because it was coming to the week of the All-Ireland hurling we were looking at a lot more. We were getting a bit stressed,” said Nicole.

“Only for this place we’d be lost. We’d have nothing.”

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