‘If our son Liam got Covid, it really would be devastating’

As the country reawakens from its Covid slumber, many Irish families are returning to the fullness and variety of the life they knew before.

et for others, the cocooning and the isolation will continue. Niamh Ryan’s 12-year-old son Liam hasn’t been to school since March 11, 2020, and a return date isn’t yet on the cards.

“Covid would have a devastating effect on Liam,” Niamh explains. “It really would be game over. We would be at home cocooning in ‘normal’ times anyway, but for the last year things have been even more isolating.”

Liam was diagnosed with cerebral palsy as a child, and has a significantly compromised immune system. Keeping him safe and well has been a ceaseless challenge for his mum Niamh, dad Gerry and twin brother Sean.

He has been a regular ICU patient in his 12 years, and in 2013, Liam spent several months on life-support in Temple Street hospital. “Things got fairly hairy for a while,” Niamh says quietly.

Yet Covid has brought even more complications to the family.

“We were terrified,” Niamh recalls, referring to the moment when she realised that a virus that attacks the respiratory system had made its way to Ireland.

“For the first few months, we had absolutely no one in the house, not even nurses. In July, we started allowing our night nurses back into the house. I don’t think we realised how exhausted we were doing the days and nights until the nurses came back.”

Liam requires round-the-clock care, much of it administered by his family. There are 24 different types of medications to administer (“and that’s when he is well”).

Niamh does chest physio with him three times a day, and tends to his feeding tube before he uses a BiPAP machine (ventilator) to sleep at night. Having also been diagnosed with epilepsy, seizures are common. “You’d be kept busy,” Niamh admits.

Despite his many challenges, Liam is a happy child with a great sense of humour. “Oh, he’d be pure devilment if he was running around,” Niamh smiles.

“He says so much with his eyes, and he misses absolutely nothing. Liam may be non-verbal, but he’s well able to let you know when he likes something or not.

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Liam’s brother Sean Ryan (far left) won the Young Carer award in 2018

Liam’s brother Sean Ryan (far left) won the Young Carer award in 2018

“He and Sean have a great bond, and always have,” she adds, noting that Sean became, at the time, the youngest ever recipient of a Young Carer award in 2018.

“It has been difficult for Sean as Liam has needed so much attention, but Sean absolutely loves him and doesn’t resent him. And Liam is happiest when he sees Sean pottering around.”

The family first heard of LauraLynn children’s hospice in 2013, after Liam had come off several months on life-support. Since the hospice opened in 2011, 481 children and families have availed of LauraLynn supports.

“When you hear the word ‘hospice’, you have this idea of what that might be like from when you might have visited an adult’s hospice, so we were reluctant for a long time,” Niamh recalls.

“We met with Ann Booth (LauraLynn’s clinical nurse specialist) and it’s no exaggeration to say it’s changed our lives.

“Liam’s care needs had gotten to such a point where we were just exhausted,” Niamh explains.

“Gerry was working full-time so it was hard to keep it all going. We were particularly stressed and wrecked. But LauraLynn is such a bright and cheery and happy place.”

What was immediately life-changing were the respite breaks that LauraLynn offers to families with children with life-limiting conditions.

In 2020, 212 children and their families received support from LauraLynn’s hospice service and over the year. During the pandemic, virtual supports, from play therapy and music therapy to counselling and symptom management, were offered to families.

“They have family accommodation upstairs, and Liam stays downstairs with other children where they have one-to-one nursing,” Niamh explains. “It took a while for Liam to get used to it, but he loves it now. And for us, we know we’ll get a full night’s sleep.

“We can also bring Sean to a gig, or a match, or the zoo and do things that we can’t normally do when we’re at home,” says Niamh. “It’s so important to us, as all of our daily lives revolve around Liam’s needs. We get to meet with other families in similar situations, and Sean has made friends with other siblings. They all just get it.”

Niamh notes that these respite stays give her much-needed room to breathe and regroup. “It really makes you appreciate everything a lot more,” she reflects. “You’re going through each day as best you can, and the days run into the next, unless your child gets sick.”

To mark Children’s Hospice Week (May 17-23), LauraLynn commissioned research where they spoke to families who had availed of their services. Approximately 3,840 children in Ireland are living with a life-limiting condition, 1,900 of whom have palliative care needs.

The findings of their research make for stark reading. Eighty five per cent of parents surveyed reported that their relationship with their partner was affected as a result of having a child with a life-limiting condition.

“It’s very commonplace,” concedes Niamh. “If anything, this has made Gerry and I stronger. From the day I was put into the ambulance [in labour], the bond between the two of us strengthened. But we are definitely the lucky ones. It’s such a tough road I couldn’t imagine doing it alone.”

Elsewhere in the research, it’s revealed that over 75pc reported that their relationships with other children are affected by their family’s circumstances.

Over 94pc of parents surveyed reported an increase in stress as a result of caring for their child during the pandemic, while over 96pc of respondents reported feeling more isolated.

“It’s definitely been isolating. We’re lucky in a way that Sean is a very understanding child and knows what we have to do to keep Liam safe and well in a pandemic,” Niamh says.

“Obviously we’ve had our ups and downs, trying to get homework done and homeschooling, but his school, the Holy Family Senior School in Portlaoise, have been a massive help.”

For now, Niamh and Gerry are waiting to be vaccinated, and are hopeful that the boys will be in time, too. “Everyone talks about the vulnerable in society being looked after [during this pandemic] but I feel that children with serious illnesses have been totally forgotten and ignored,” Niamh admits.

“Really, what keeps us going are the short breaks at LauraLynn. We went for one a few weeks ago, and we are booked in again in August. When those few days are up, you’re back to doing it all over again and trying to keep going until the next break.”

LauraLynn is Ireland’s only children’s hospice providing palliative/hospice care and support for children with life-limiting conditions and their families from all across Ireland. For further information please visit lauralynn.ie