Moving wedding
at Rachel House
By Gary Moug
IMAGINE being
told your baby boy probably won’t live beyond his first birthday.
 Donna and Jason Charnley don’t have to use their imaginations. That’s exactly what doctors told them about their precious son, Jack.
Despite suffering pre-eclampsia throughout her pregnancy, a relatively common condition for first-time mothers, doctors assured Donna (25) her baby was developing normally and there was no reason to suspect anything was wrong.
However, after giving birth five weeks early, the midwife told Donna the baby had been born with six fingers and a cleft lip and palate.
Joking
Donna, from Allanton, Lanarkshire, said, “I thought the midwife was joking. When she said Jack had six fingers on each hand, I expected her to follow up by saying he had two heads or something equally ridiculous. It was only when she handed him to me that I realised it was no joke.”
Baby Jack was whisked away from Donna minutes after the birth to undergo tests and he was diagnosed within 24 hours.
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(Above)
Donna and Jack.
(Below)
Donna and Jason on their wedding day.
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“Jason and I were invited into the doctor’s office and I knew immediately the news wouldn’t be good when I spotted two glasses of water and a box of hankies on the desk,” Donna said. “The doctor sat us down and explained that Jack had Patau’s Syndrome, a rare chromosome abnormality that would severely cut short his life.”
Abnormalities
Patau’s Syndrome, also called Trisomy 13, occurs when a child is born with three copies of chromosome 13.
Normally, two copies of the chromosome are inherited, one from each parent. This extra chromosome causes numerous physical and mental abnormalities including eye defects (Jack has a cataract in his left eye), deafness, breathing problems and heart defects.
Life expectancy for children with the condition is no more than a year, and although Jack has already reached the age of 15 months, Donna knows he could be taken from her at any time.
“The hardest thing is knowing I probably won’t get to see him grow up. You hear about other families with these problems, but you never think it’ll happen to you.
“The doctor told us there was a high chance Jack would die within two or three months, so he’s already way beyond his initial life expectancy. We don’t know how long we’ll have him — it might be another month, it might be five weeks, it might be five years.”
Seeing Jack asleep on his big bed, surrounded by bright toys, it’s impossible to imagine the suffering the little lad has been through in his short life.
Crabbit
He’s already had an operation to repair his cleft lip and palate, a procedure which required him to be hooked up to a ventilator for a week afterwards. He’s also had his extra fingers removed, but he takes frightening seizures now and again.
Donna says he can be a right crabbit so-and-so when he wants to be, but sometimes a little smile breaks out on his face, especially when someone kisses the side of his ear or makes a funny noise.
She’s pretty sure he’s comfortable most of the time — the No.1 priority for any parent in her situation.
I met Donna and Jack while they were spending a week at Rachel House. Work commitments meant Jason couldn’t be there but the Kinross hospice will forever have a special place in their hearts. Not only has it offered invaluable respite, it was also the location for Donna and Jason’s wedding!
“A few months ago Jack took a really bad seizure and was taken to hospital,” Donna recalls. “He suffered more than 20 seizures over the next 24 hours and it was touch and go whether he’d survive. Doctors said they couldn’t do any more for him, so we brought him here, to Rachel House.
“There’s a room set up at the hospice for children to pass away in — it’s really beautiful and peaceful and it seemed like the right thing to do.
Losing him
“Jack was here for five weeks and there were some moments when it looked like we were losing him. Jason and I had always said we’d get married while Jack was still here so, one day during that time, we just decided to go for it.
“We decided at 11.30 one morning and within an hour I was in Perth buying a wedding dress and picking up a special wedding licence. The staff here arranged the whole thing, including organising the chaplain, buffet and cake.
“I quickly phoned some of my close relatives and told them if they wanted to attend my wedding, they’d have to get themselves to Rachel House for 5.45 that evening!
“The ceremony took place in the hospice’s quiet room and staff put up decorations and balloons. It was really lovely.
“Some of the kids stuck a ‘just married’ sticker on the back of a wheelchair and insisted on wheeling me up and down the corridor — it certainly made a change from the traditional wedding car!
“Some of my happiest moments with Jack have been at Rachel House. He seems to relax more here and laps up the attention.
“When my doctor first mentioned Rachel House I didn’t know what to expect, but it’s a really positive place and the staff are brilliant.”
The wedding was back in February. Happily, Jack pulled through his crisis then and last week’s stay at Rachel House was a pre-planned visit.
Donna is now busy organising a fund-raising event for CHAS. “I’ve joined an organisation called Soft UK,” she said.
“It’s a support group for families in our situation and we’re having a charity disco in the Allanton miners club on June 11.”
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You can e-mail us at:
hospice@sundaypost.com
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