Parents of an Aberdeen baby born with three holes in the heart and one kidney say they are holding out hope they’ll be able to take their “strong little man” home from hospital.
Five-month-old Ollie Murray has been plagued by health issues throughout his short life and recently had to have open heart surgery.
Parents Jessica Reid and Lewis Murray, who are by his bedside in Glasgow, today told of the agonising experience of caring for their baby son and how they are trying to stay positive in spite of frequent health setbacks.
Moments after Ollie was born in August, doctors pulled Jessica and Lewis aside to tell them the devastating news he had been born with one kidney and two holes in his heart.
Jessica, 26, says it came like a bolt out the blue.
She said: “Everything was fine. I had been scanned at 20 weeks and the results showed Ollie was going to be born with a cleft lip.
“When Ollie was born the doctor took him away because he was struggling to breathe.
“A couple of hours later I was told the doctors were still working on him and we were eventually taken to a little room where they told us he had two holes in the bottom chamber of his heart.
“The valves in his heart were a lot narrower than they should have been and it was making it hard for him to get blood to the lungs – which would make it difficult for him to breathe.”
Further tests were carried out on Ollie and doctors revealed he was also suffering from a rare genetic condition called CHARGE syndrome.
Jessica said: “It will be a lifetime thing and he will always require help.
“He’s also failed his hearing test and would need to get a cochlear implant in the future.
“We have been quite lucky these have been caught early on.”
Children born with CHARGE syndrome are often born with life-threatening birth defects and loss of hearing or vision.
Ollie was scheduled to have his open heart surgery in the spring. However a spell of ill health and breathing difficulties made doctors push up the date for the major operation.
It was carried out at the Royal Hospital for Children in Glasgow just before Christmas – but it was only when doctors opened up Ollie’s chest that they found a third hole in his tiny heart.
Jessica, a nursery practitioner, added: “We were told Ollie would need to have his surgery before Christmas because he would get blue in the face when he was crying and he was struggling to breathe.
“But when he went in for the surgery the doctors found another hole in his heart.
“It was in a complicated space to get to so the doctors have said he will have to wait until he’s older to have the second surgery and eventually have a replacement valve fitted.”
But Ollie’s health struggles weren’t yet over. During recovery, his scar from the heart operation got infected and germs spread to his heart and lungs.
At the beginning of the year, he had to be re-admitted to the operating theatre so doctors could flush out the infection.
Jessica said: “We were quite upset and frustrated because it was one thing after another and then another when he was born.
“I constantly ask myself when will this all end and we can just have good news for once.
“Now our fingers are crossed he recovers and gets stronger so we can move forward and go back to normal.”
Ollie’s mum added: “He had a pacemaker to start with, just after his operation, but they were taken out a few weeks after.
“He’s on a ventilator now and we’re waiting to see if he’s strong enough to breathe on his own. It’s a waiting game and we’re taking baby steps – concentrating on getting him strong enough to go home.”
Jessica says she hopes Ollie is over the worst of it.
She added: “He’s our incredibly strong and resilient little man.”
Since the surgery, Mastrick couple Jessica and Lewis, 24, a quality control inspector in the subsea industry, have been staying at the Ronald McDonald House in Glasgow.
Their five-year-old son Alfie has been cared for in Aberdeen by family.
Jessica said her only wish is to do something together as a family. “We are desperate to get back to normal,” she said.
“It feels like forever we have been away from home – from our friends and family.”
The couple are hoping to set up a fundraiser with the funds going towards Ronald McDonald House to “repay” them for the service which was offered to them.
Jessica’s grandmother Grace Reid and her friend Julie Adams have organised to raffle off baskets full of goodies and auction high street and restaurant vouchers to fundraise for the family to experience a small getaway.
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The raffle will be held on March 2 at Pleyfauld House in Inverurie, where Jessica’s grandmother has sold 75 tickets. So far, more than £1,000 has been raised through the initiative.
“Lewis has been off work since the beginning of December, so my grandma thought this would be a nice way to help us out and do something nice together,” Jessica added.
In spite of the heartbreaking series of medical setbacks, Jessica and Lewis are finding moments of joy.
Just last week, Lewis was able to give Ollie a cuddle for the first time since the open heart surgery.
Jessica said: “Lewis was delighted – he couldn’t wipe the smile off his face.
“Ollie was such a happy baby before his surgery and it’s so nice to see him smiling again.”