MANY HOSPITAL APPOINTMENTS which are not Covid 19-related have been delayed under the current health crisis but with that brings uncertainty for families of seriously ill children who are waiting for potentially life-saving procedures both at home and abroad.
Taoiseach Leo Varadkar has set out a roadmap for the coming weeks and months to reopen parts of the healthcare sector, along with other sections of society, but for families like the McDonnells from Offaly, it can’t come soon enough.
Ten-month old Dáire McDonnell was born with a rare medical condition – TTC7A – which meant Crumlin Children’s Hospital has been his home since birth.
This bowel disease and a compromised immune system meant that a bowel and liver transplant was needed, along with bone marrow treatment, but when Covid-19 reached Ireland it put a halt to plans, leaving Dáire and his parents in limbo during the public health crisis.
“He’s a very complicated little boy, he had multiple abrasions of the bowel and he has a combined immune deficiency so he has a really rare auto-immune disease – there’s only around 31 in the world,” mum Dervla McDonnell said.
“He was sent to Birmingham in January for bowel and liver transplant assessment and it was deemed that he needed a hematopoietic stem cell transplant first and we were due to to go to Newcastle on a Monday [last month] and it got cancelled the Thursday beforehand because of Covid.”
“It was going to make such a difference,” she said. “Now, we just want to get him home while we’re waiting. Crumlin can’t do anymore, they’re only monitoring him so we got trained on doing all his care and will be doing it at home now.”
Dervla, her husband and their two older children, aged three and seven, have been living at Ronald McDonald House near the hospital since February, before which they faced a lengthy return trip from Offaly each day.
From Tuesday, after training from nurses and doctors, the family will return to their home in Offaly, with necessary alterations to accommodate the needs of the newest addition to their family.
But securing a new appointment for Dáire’s treatment in the UK is unlikely anytime soon, and the uncertainty of that is a worry for all concerned.
“We want to get him home, we’ve never got him home and we need to get some sort of normal family life. The five of us are in the room here at the minute, since we started living here in February.”
He was supposed to go to the UK just before everything went pear-shaped. Unfortunately with Covid, that has been cancelled until August, they reckon. Realistically, it’s going to be longer.
“And as restrictions are eased, it’s not going to make any difference to us, we’re still going to be staying in isolation at home. We’re after doing a Tesco home delivery and we have a chemist doing delivery… we’re going to be staying indoors.”
Marian Carroll, CEO of Ronald McDonald House pointed out that there are many families in a similar situation, trying to navigate the current health crisis, while also caring for sick or seriously ill children.
The house near Crumlin Children’s Hospital normally accommodates up to 20 families, but as families moved out in recent months, they weren’t replaced in order for the charity to adhere to public health guidelines around social distancing.
Now the charity is rallying resources to support the 12 families that currently live there.
“There are 12 families here now, and to allow us to manage them under the guidelines we have had to lock down all communal areas, so the areas they normally would have access to, where they would have time to cook for themselves or have tea, or play areas for children, are restricted.”
“And it’s even more isolating for our families now after they have spent a day in hospital… although they’re close to their child, they’re isolated form their network,” she added.
“For us, the most important thing is that we can stay open, so we implement our guidelines and social distancing, locking down parts of the house, and that’s to keep us open so at a minimum for our families, that they are still getting food and somewhere to sleep at night.”
Dáire’s mum, Dervla, said she hopes that people will think of those like Dáire, and other children with compromised immune systems, when they become tired of the public health guidelines over the weeks and months to come.
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