A family from Ripon knows just how devastating it can be on the waiting list for a transplant that doesn’t arrive in time.
Baby Zachary Davies, born in November 2012 with a rare heart defect, couldn’t survive after suffering four heart attacks in the first month of his life.
He was top of the waiting list for a heart transplant in the whole of the country, but it came too late and he died at just 29 days old.
“Had there been more donors available, had more people been willing to sign up to the register, then maybe Zachary would have been with us today,” said his mum Libbie and dad Steve.
“But it is what it is. There wasn’t a heart available.”
The couple, from Studley Road, first found out there was a problem at Libbie’s 20-week pregnancy scan.
After two healthy pregancies they had been sure everything would be fine and had brought their two elder boys Owain, seven and Oliver, four to the hospital.
There they learned the baby that Libbie was carrying was suffering from hypoplastic left heart syndrome, a rare congenital heart defect.
“It was a bombshell,” said Steve, 45. “The doctor said this is as bad as it gets.”
The rare condition meant that when Zachary was born the left side of his heart was underdeveloped, with two working chambers rather than four.
“It’s a condition there isn’t a cure for,” said Steve. “But through the miracles of modern medicine, there are solutions. We could buy time.”
The family were told Zachary’s only hope for survival was a series of three operations. But at each one, his parents were warned, there was a 25 per cent chance he wouldn’t pull through.
“It was a no-brainer,” said Steve. “We wanted Zachary. If there was a chance he could survive, we wanted to try.”
For Libbie, 35, seeing her baby son taken away just hours after he was born was the hardest part.
“You don’t have children just for the good bits,” she said. “But if there was a chance of life, we wanted to give him that chance.”
Zachary was taken into the operating theatre in Newcastle when he was two days old. But everything was brought to a sudden stop when he went into cardiac arrest.
The doctors managed to help him through but the next morning his parents were called again. Zachary had suffered a second heart attack. Doctors narrowly prevented a third.
He was put on a life support system called an Ecmo machine, which supported his breathing and helped his heart beat. And he was put on the transplant list.
“He was the youngest in the country, and first on the list,” said his dad. “If a heart came up, it was his.”
Every day that Zachary was on the list was torture for his parents, they said. Every time the phone rang, they thought it might be the call they were praying for.
“We were playing a balancing act, of trying to a get a heart before his own packed up,” said Steve. “Trying to keep him going. Hoping something would come through.”
Slowly, Zachary’s condition began to improve. But, after the first operation was declared a success, he had his third cardiac arrest.
And, on December 12, 2012, Zachary suffered his fourth heart attack. He was 29-days-old.
“It was one too many,” said his dad. “He passed away waiting for a heart.”
Now, after reading about the Advertiser group’s campaign, his family say they will do all they can to raise awareness of the power of organ donation.
Already, they say, many of their family and friends have pledged to sign the register, and they themselves are “card-carrying members”.
“It takes tragedy to make people realise the importance of life,” said Steve. “This absolutely woke me up.
“You go through desperate emotions, waiting. You want that organ to become available so that your child can live.
“It’s easy for us to say sign up - I know nobody wants to think about their child dying. We knew it was an option, and still we hoped.
“But even if the thought of signing up is the most heartrending and difficult thing to do, we have to try and encourage people, who have the chance to make such decisions, to think about it.”
Libbie says this past year has changed her. She still can’t hear the phone ring without jumping, without thinking of transplant lists and donors.
But she says she wants to do all she can to prevent other families from going through what they have.
“We were ignorant of it all,” said Libbie. “This was a world we didn’t know. Of hospitals, of having babies die.
“But where there’s life there’s hope. It’s a hard conversation to have when you’re fit and healthy, but that’s the time to do it.
“We had a month with Zachary and we’re grateful for that. But we would have loved to have more.”