IT’S every parent’s worst nightmare to bury a child, but perhaps crueller still is caring for a child that you know may not have long to live.
When Mark and Helena Murray’s third baby, Jamie, was born, they were told he might not survive. When Jamie was diagnosed as having a neurological condition called holoprosencephaly (HPE) during Helena’s pregnancy, at 22 weeks’ gestation, the Murrays were warned that the chances of Jamie dying following birth were high. Immediate family gathered around as Helena was prepped for a caesarian section; they had come to say goodbye.
Now, five and a half years later, Jamie has faced many battles for his life. As happy and as comfortable as the Murrays can make him, he has diagnoses including hydrocephaly, HPE and a neurological condition called Dandy Walker Complex (affecting mainly the part of the brain responsible for coordinating movement) . He is blind and deaf, and requires round-the-clock care.
“He’s had nine shunt revisions since birth, life-threatening each time,” Helena says, sitting in her living room, waiting for Jamie to wake from a nap. “His brain stem isn’t developed so as he’s growing, he’s getting worse and worse. Every year there’s something different. He was a year old when he stopped swallowing. At 16 months, he started getting seizures.” Living in the shadow of Jamie’s life-threatening health scares has become daily life for the Murray family: “Since the day he was born, we’ve had to face that… so we’re grieving for him every single day, and caring for him at the same time.”
Helena runs through Jamie’s schedule of care, producing six pages of hourly tasks that need to be done every 24hrs. He’s PEG (percutaneous endoscopic gastrostomy) fed through a tube, and has a shunt to help drain fluid from his brain. The Murrays receive 48 hours of nursing assistance per week, which Helena says can help with sleep, but it still leaves her with 18 hours out of every 24 unassisted.
As he’s grown, the Murrays now have a hoist to help lift Jamie for changes, but when he wakes from his nap, Helena carries him into the room on her hip. He soon drowses back off, and she cradles him as she talks.
When Jamie was born, Helena was stunned at the lack of available services; in isolation, she’s had to develop the medical skills to provide his care, meaning his life is quite literally in her hands. “His PEG blocked yesterday,” she says. “You have to push the tube into a hole in his body. I was sweating, and I couldn’t get it in for about half an hour. If you don’t get it in within an hour it closes up and then he’d have to go under anaesthetic again, which is always life-threatening for him. It’s unbelievable stress... Trying to get services has been battle after battle,” Helena says.
“It gets very frustrating when you have to go into hospital, because there’s new doctors every six months and they don’t know Jamie. I’ve had to get my paediatrician to write up a letter based on his procedures, not their procedures.” The stress has led to depression and feelings of guilt for Helena, who is currently on a low dose of anti-depressants. “The worst thing is when you’re depressed, no one tells you that’s normal in a situation like this,” she says. “You think you’re an awful person and you’re taking it out on your husband and your kids, but it’s normal to feel like that, and it’s normal to have really bad days.”
With two other boys to care for, Jack, 12, and Lucas, 7, Helena fears that her other children’s needs aren’t being met. Both boys are very active, playing hurling and football as well as swimming, and when her husband Mark is at work, it’s a huge challenge to be there for all three of her children. “When we’re at home, Jamie takes up so much of our time and they’re suffering because of it,” she says. “I’ve never heard them give out about him, or say ‘I wish Jamie wasn’t here,’ or ‘We can’t do that because of Jamie.’ They never give out about him, but it’s hard for them.”
Neighbours in the close-knit community of Clondullane, a village outside Fermoy, Co Cork, have rallied around; they help with the older boys if Jamie has a medical emergency, and run a mini-marathon each year to help with the costs of Jamie’s care, which include everything from huge heating and electricity bills to insurance for their modified wheelchair-accessible car for carrying Jamie.
The Murrays also have access to LauraLynn Children’s Hospice. Based in Leopardstown in Co Dublin, it’s Ireland’s only children’s hospice and provides a range of services for free to children with life-limiting conditions and their families.
LauraLynn provide numerous services to families, including counselling services, activity camps for siblings, and respite care to allow parents to spend quality time with their other children, or simply to have a night off. They’ve also recently introduced a pilot home-care service, but it’s in the Dublin area only at present.
But Helena says the respite care service makes an enormous difference to their quality of life, and that the care and support provided by LauraLynn is “absolutely fantastic”. The staff go to enormous lengths to get to know the children and tailor services to their needs: “I went up with him a weekend to go through his care plans and we met the nurses, dietician, paediatrician, physiotherapist; we met everyone involved, so they could get to know him. I was just in the background letting them know what he likes and doesn’t like.”
Helena and Mark were able to take a five-day holiday in London with Jack and Lucas recently, and also attended the annual LauraLynn ball for a rare night out, where they had a chance to connect with other parents in similar situations, secure in the knowledge that Jamie was being cared for by hospice staff.
“There were parents sitting beside us we’d never met before who have a one-year-old who is very sick at the moment and it’s very, very raw for them,” Helena says. “They asked us if it gets better.” And does it? Helena shrugs. “Jamie will be six in November and we just take each day as it comes. I could be talking to you next week and telling you the bad news. It could be just like that.”
Despite the seemingly endless rounds of medical intervention, and all of the scares and times they’ve believed Jamie wouldn’t pull through, the Murrays have opted for resuscitation for Jamie should he stop breathing.
Helena’s eyes well up as she explains why:“I will fight to the end for him,” she says. “I believe that when he is going to go, he’ll go himself, not because of a shunt or something that can be fixed. We’ve written up that we want him resuscitated, but we know that if he’s really bad, that’s it. We’re not in denial. We know he won’t be around for long more; we just want to enjoy the time with him. We’re lucky to have him this long.”