A newborn baby who was moments from death after suffering severe heart failure at just two weeks old is celebrating his first Christmas as a happy, lively eight-month-old.
Zipping around the kitchen of the family’s Dronfield home in a baby walker, Zack Ledson is just like any giggling baby his age.
But the adorable tot has endured the toughest start imaginable, after undergoing life-saving heart surgery at Great Ormond Street and spending four months of his life in hospital.
“Christmas this year is about so much more than presents,” said his mum, Nicola Green. “Six months ago we thought we wouldn’t have a Christmas because our baby wouldn’t be here.
“We are mainly just glad to see this year over. It has been a complete nightmare - we have seen things that will haunt us for the rest of our lives. But we have ended with an outcome that we could have only dreamed of.”
On May 3, two-week-old Zack was rushed to Sheffield Children’s Hospital after his parents noticed he was breathing rapidly.
“He looked so poorly” said Nicola. “His face was full of fluid and he couldn’t feed. It was awful. He was too poorly to even cry. He was making a crying face but there was no sound.”
He was wrongly diagnosed with bronchitis, but Nicola’s mum – a nurse – recognised the symptoms and insisted he had a heart scan.
Two-week-old Zack was rushed to the specialist children’s heart unit at Leeds General Infirmary who diagnosed him with severe heart failure.
“If it had been much longer he wouldn’t have made it,” said his dad, Bill. “They took us into the backroom and told us that pressure had built up in his heart. They told us that it was his left side, and if the left ventricle is damaged, there is no surgery. That’s it.”
Nicola added: “The cardiologist gave us two choices. The first was to have his aortic valve replaced in an operation called the Ross procedure, but it had never been done in a baby of his age. The second was to inflate a balloon in his aortic valve to stretch it. But he said that it could tear it, and in his words, that would be catastrophic.
“I felt like I wasn’t old enough to making those decisions. I was asking myself ‘who am I to make the decision of someone else’s life?’”
They opted for the balloon procedure and were told it had been a complete success. But the next day, they were devastated to be told the valve had torn and it was leaking.
With only the Ross procedure left, Zack – aged three weeks and just 6lb 6oz – was sent home to gain weight ready for the operation.
Nicola said: “They just said feed him, feed him, feed him. He was doing really well. Then he took a turn for the worse. We took him back to Chesterfield Royal and they scanned him. The lady just kept saying ‘Oh my God, oh my God. It’s dreadful’.
“He wasn’t coping. His body had had enough.”
Zack was taken to Leeds via ambulance where he was rushed into intensive care.
On June 4, the couple were visited by a cardiologist who told them the only options left were to put Zack on a transplant list, or withdraw treatment.
“We were told to be realistic about the chances of a transplant,” said Nicola. “We had decided it wasn’t an option. The chances of getting a heart were very slim. The chances of him dying waiting for a heart were massive. If he was going to have a life I wanted him to have a quality of life. I don’t believe in life at any cost.
“Even with a heart transplant they couldn’t guarantee us more than eight years. We had seen people who had had one, and by the time they were teenagers they had had six transplants.
She added: “The only way I can explain how I felt was it was like being stuck in a tornado and you are trying to hold on really tight while people are throwing the biggest decisions you will ever make at you. You are trying to cling on to life and someone is trying to make you answer questions.
“But I did get comfort from knowing that life couldn’t get any worse. I don’t think there can be anything worse than watching your child die. I used to worry about money. Not now. As long as the kids are fed, I don’t care.”
Nicola and Bill made the heartbreaking decision to withdraw Zack’s treatment in the hope of making his last moments more comfortable.
But Zack was given a last chance at life when surgeons at Great Ormond Street hospital agreed to try the Ross procedure, despite it being unprecedented in a child of such poor heart quality.
He was flown by helicopter to the London hospital while his parents followed on the ground.
Bill said: “We were made very aware that this was to try. It had never been done on a baby of Zack’s age, weight and poor heart quality.”
Nicola added: “The surgeon said ‘I can’t promise you anything. I’m just going to try’. Then he told me to go and give him a big kiss. He was basically saying say goodbye.”
But fighter Zack survived eight hours of open heart surgery. The surgeons didn’t immediately sew up his chest because of the risk of swelling so Nicola and Bill could see his heart beating through a transparent panel designed to keep out infection.
Just two days after he arrived at Great Ormond Street, two-month-old Zack was sent back to Leeds General Infirmary to recover from his successful operation.
The family remained there until July 17 when they were sent home to be with their four-year-old son, Jacob.
Nicola said: “Having him home and healthy for Christmas is unbelievable. I would never have dreamed I could have a baby as happy and full of life as he is. He has more energy than a healthy baby.
“He is still taking lots of medication and his heart isn’t perfect, but it’s good.”
She added: “Our family and friends have been so supportive. We were never on our own. But he wouldn’t be here without my mum. We couldn’t have done it without her.”
Zack is now looking forward to a normal life. He will need further surgery at 13, and again as an adult.