This Christmas Day, like many parents, Anouska and Chris Wardale will help their two-year-old son Reggie unwrap his presents.
But this year, the Wardales will have more reason than most to celebrate.
Last month Reggie, who was born with half a heart, was only hours from death when the family heard a donor organ had suddenly become available.
Now his parents have been given the best Christmas present ever – their son is healthy and recovering well.
“We’re celebrating every day, because each day is one we didn’t think we’d have with Reggie,” says Anouska, 26, from Kirkby Stephen, Cumbria.
Before Reggie came along, she and Chris, 27, longed for a baby, but struggled to conceive. So when she fell pregnant in March 2017, the couple were over the moon.
“We couldn’t believe it was happening,” says Anouska, who at the time worked in a cafe.
Then, at her 20-week scan, they were dealt a devastating blow.
The sonogram showed there was something wrong with the baby’s heart.
They were referred to the Royal Victoria Infirmary in Newcastle – two hours’ drive away – for a more in-depth foetal scan.
There they were told their baby had hypoplastic left heart syndrome – a rare congenital heart defect.
Only 250 babies a year in the UK are born with the condition.
The Wardales were told that little Reggie would need a series of open-heart surgeries, and would eventually need a transplant.
“We were devastated,” says Anouska.
Doctors gave the couple three options – they could carry on with the pregnancy and surgeries to give him the best chance at life, they could choose to terminate the pregnancy or refuse medical intervention when he was born.
But for them, there was only one option. Anouska says: “Although it’s a very rare condition, the doctors told us that they see a lot of children with hypoplastic left heart syndrome in that hospital, and that gave us comfort.
“It was never really a choice – we just knew we didn’t want to terminate. We wanted to give the baby a chance to live.”
At 39 weeks pregnant, she was induced and Reggie was rushed to the nearby Freeman Hospital, also in Newcastle, for his first open-heart surgery.
“We were in bits – it was very tough,” says Anouska.
The following morning, before his surgery, she and Chris held their baby for the first time.
“It was an amazing feeling, but it was tinged with sadness knowing he would soon go into surgery,” she says.
At just two days old, Reggie had an operation called the Norwood procedure, which helps get blood from the heart to the rest of the body and ensures blood flow from the heart to the lungs.
The surgery was a success and just three weeks later Reggie was discharged to be monitored closely at home.
He was fed through a nasogastric tube every three hours.
“We’d take it in turns to do the feeds, so we both had at least six hours’ sleep,” says Anouska.
Reggie seemed to be progressing well, but when he was a few months old, his blood oxygen levels dropped to dangerous levels and he was rushed back to hospital.
In April 2018, at five months old, he had further open-heart surgery to repair a leaky valve, and spent 10 weeks in a high-dependency unit.
By January 2019, he was well enough for another operation to repair his heart – the Glenn procedure, which diverts blood from the upper body straight to the lungs, meaning it can pick up oxygen without going through the heart.
Although the surgery went well, doctors found Reggie’s leaky valve, which had been repaired last year, was leaking again and he was forced to spend another 10 weeks in hospital.
Despite having his name on the urgent transplant list, his parents knew that donor organs for children were rare.
There was a chance that their son wouldn’t survive long enough to have the operation.
“The only thing the doctors could do was to give him medication and oxygen,” says Anouska.
“He was on maximum diuretics to help with fluid retention and three types of heart medication just to keep him stable for as long as we could.”
She moved into special accommodation for parents of ill children, provided by the Sick Children’s Trust.
Meanwhile, Chris was forced to make a four-hour round trip between their home in Cumbria and the hospital between shifts as a parcel delivery driver.
Meanwhile, Anouska tried to keep herself busy.
“You learn to exist,” she says. “I did as much as I could for Reggie by feeding him in the hospital to keep myself occupied. That’s how I coped.”
Then one afternoon, the transplant co-ordinator came to Reggie’s bedside to say that there was a potential new heart available.
“I just burst into tears,” says Anouska. “I was relieved but cautious.
“I called Chris and he rushed to the hospital. The whole afternoon was a blur.”
At 10.30 that evening, Reggie went into surgery, while his parents tried in vain to get some sleep.
“We had to leave him at the theatre doors. It felt very strange,” says Anouska.
After a sleepless night, they got the call they’d been waiting for– the operation had been a success.
By 7am, they were meeting with the surgeon, who explained that Reggie had stayed off life support during the surgery, which was hugely positive.
He was put on anti-rejection medication.
“We tried to just take it hour by hour,” Anouska says.
Reggie’s condition slowly improved and within days he was sitting up listening to his parents reading him stories.
As the time rolled by, he was able to eat unaided and start taking his medications orally.
Although it’s still early in his recovery, the family hope he will be well enough to be home for Christmas.
“But wherever we are, we’ll be celebrating,” Anouska says.
“This is a Christmas we didn’t think he’d see.”
The family are working with the British Heart Foundation, and hope that one day medical advances will mean that families of children with hypoplastic left heart syndrome won’t suffer the same trauma as they have.
Meantime, they can look forward to a bright future with their little boy.
“We’re really grateful to the donor family for making that life-saving decision to donate,” says Anouska.
“We feel so lucky that our little boy gets a second chance at life.”
source
https://www.ladunliadinews.com/2019/12/baby-born-with-half-heart-receives-life.html
