Saturday 24 August 2019

Change is Heaven Cent for children's hospitals

Wards are in desperate need of funds to improve services, writes Nathalie Marquez Courtney

The Shortall family (from left) - Kevin, Louise, Tracey, Jane and Sam.
The Shortall family (from left) - Kevin, Louise, Tracey, Jane and Sam.
Caitlinn O'Mahony gets a visit from Bressie at Temple Street Children's University Hospital in Dublin.
Tracey Shortall, with her daughter Louise

Natalie Marquez Courtney

OUR CHILDREN'S hospitals are some of the busiest in Europe. Combined, Temple Street Children's University Hospital and Our Lady's Children's Hospital, Crumlin, offer treatment and support to more than 250,000 children and their families. Every year, more than 133,000 children pass through the doors of Temple Street Children's University Hospital alone. Just a few months ago, five-year-old Caitlinn O'Mahony was one of them.

Caitlinn had been diagnosed Prader-Willi syndrome, a very rare chromosomal disorder. Side effects include poor muscle tone, some learning difficulties and problems eating.

Her dad Joe Salmon (33) and stepmum Jennifer O'Connor (27) had travelled from Cork to Temple Street to discuss treatment for her condition, when doctors noticed her unusually shaped head.

This resulted in another diagnosis – completely unrelated to the first – for Craniosynostosis, which meant that the joints in her skull had fused much earlier than they were meant to.

"They normally don't fully close until you're 21," explains stepmum Jennifer. "Caitlinn was only four years old."

Over the following months, Caitlinn was in and out of surgery as doctors attempted to remould her head and correct the condition.

"There was a different surgery every week, and there was a lot of trial and error because it hadn't been caught earlier," remembers Jennifer. "She got an infection then, so we had to bring her back and they had to reopen her again, and change all the bolts, screws and fittings.

"She's such a tiny little thing, I can't believe she went through all that."

It was a difficult time for her dad, Joe. "I was signing all these forms, and it felt like I was signing her life away," he recalls, describing how frightening it was to learn that the infection meant his daughter was losing part of her skull, or that fluid had to be drained from her brain.

In all, Caitlinn underwent nine operations, with the longest lasting a gruelling nine hours.

"I was at the end of my tether, but the nurses were just fantastic," Joe says. "They made us feel at ease, and were checking on her constantly. We had so many leaks, bumps and complications."

The family had to put their life on hold, spending thousands of euro on travel and accommodation costs, and only snatching a week or two at home.

"It was very hard," admits Jennifer. "We had children at home, and Jayden was only seven months old. Thankfully my mother was able to help so that we could focus on Caitlinn."

Due to her infection, Caitlin had to spend a lot of time in isolation wards. Every Thursday, though, she would be allowed a special visitor – Buttons, one of the hospital's therapy dogs.

"Caitlinn used to wait patiently for him. It was her favourite day," says Jennifer. "I wish you could see the difference it makes to the kids' day when they see the dog."

Pet therapy has been proven to reduce stress and lower blood pressure, and can have a calming effect on a child who has gone through a traumatic time.

"The first time the dog walked into the hospital I was sure a nurse would come in screaming after him!" laughs Jennifer. "I knew nothing about pet therapy. But for the kids there, especially those who are bed-ridden or in isolation, it was fantastic."

Caitlinn is back in Cork now, recovering and enjoying spending time with her big sister Tia (10), and little brother Jayden (1). "The head has healed and she's back to her old self," says Jennifer. "She's a slow healer so it took a bit longer. She's running around, though, doing brilliantly, and you'd never think that she's been through what she has."

Mum-of-three Tracey Shorthall (35) counts herself lucky that she lives so close to Our Lady's Children's Hospital, Crumlin. Thanks to deft work at the hospital, which is the national referral centre for childhood cancer and leukaemia, her daughter Louise went from diagnosis to treatment in just 24 hours. Louise was just six years old when she started feeling unwell in April of 2012.

"Initially we had a feeling it was a viral bug," says Tracey. "She was a little bit tired, had no temperature, and the odd headache."

A visit to the family doctor led to a trip to the National Children's Hospital, Tallaght, for tests.

"Within three hours we were in an ambulance to Crumlin," recalls Tracey. "They had her test results, and had a bed waiting. It happened so quickly."

Louise went into surgery the very next day, and was fitted with a Hickman line to aid with her treatment.

"She also got her first dose of chemotherapy into her spine during that surgery," adds Tracey

Louise's baby sister, Jane, was only eight months old, and Tracey had only just returned to work, while also caring for her eldest son, Sam (11).

"We were in such shock, particularly during the first couple of days. There was so much going on. I had no clue about what we were facing. It was horrific."

Tracey praises the hospital staff, especially having witnessed the conditions they have to work under, which her husband Kevin describes as "like Barcelona playing at Tolka Park".

"They have literally saved Louise's life, and we will be forever grateful for them," says Tracey. "But they're really up against it in there. They're not just fighting cancer, but trying to work with the facilities in the old oncology ward, which are depressing."

Cramped conditions, shared toilets, insufficient equipment and a higher risk of infection are just some of the hurdles that the staff have to overcome.

"Sick children pick up infections so much quicker, so cooping with such a big mix of people was quite hard. You had children sharing rooms where they maybe shouldn't have," Tracey continues. "You feel so much for the nurses."

St John's, the cancer ward at the Crumlin hospital, is undergoing renovations, and things are steadily improving. Where before there were just three bathrooms for 20 beds, the new rooms now have both en suite and rooming-in facilities, which make it easier for families to stay with their sick child.

Tracey has seen the new ward, and marvels at the improvements. "Coming from the old ward, you walk around and you think, 'this is amazing', such a state-of-the-art facility, but it's the bare minimum that these children should have, and what they should have had for a long time," she says.

"It's an embarrassment for the Government that the ward was built completely though fundraising."

The ward still needs funds to buy essential equipment and complete renovations.

Louise, who her mother describes as "amazingly brave", has at least another year of treatment left, which will mean more visits to Crumlin for blood tests and check-ups.

Initially, when she had to go to hospital she was scared and didn't want to go. She actually loves going down now, which sounds crazy," laughs Tracey. "But she knows that the nurses down there get it, and it's a comfort for her. She gets us through it now."

While Tracey is supportive of plans to build a new children's hospital, she's eager to stress that campaigns like Heaven Cent, which is asking people for their small change, have the ability to make a difference right now.

"I know the new children's hospital is going to be great, but there are kids who will be diagnosed today, and they will have to be treated in Crumlin and Temple Street," she says. "Over 160 children will be diagnosed with cancer this year. You can't tell the–-m to wait."

To support the campaign, simply round up your loose change. Drop off your donation at any of the 800 coin collection points nationwide, which include Tesco, Bank of Ireland, Texaco and major post offices. To find your nearest drop off point or to donate online visit www.heavencent.ie

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