Watching Vinnie Holliday walk into school for the first time should have filled his mum with hope for the future. Instead, it was a bittersweet moment.
Because Vinnie, who has already survived three open heart surgeries after being born with half a working heart, needs a life-saving transplant.
The four-year-old is one of the 200 children waiting for transplants.
And because donor organs are in such short supply, he could be waiting up to three years for a new heart.
Talking about Vinnie’s first day at school last week, mum Claire, 40, says: “It was very emotional. Vinnie was so excited. He had a big smile on his face.
“I was so proud because we didn’t know if we would ever see this day when he was born. But the worry that he desperately needs a heart transplant is always there at the back of my mind.
“Vinnie has started asking about his new heart. It’s always at bedtime when we’re having cuddles. I tell him it’s being made for him by someone very special and it will be amazing, but it takes time.
“Not knowing how long we’ll have to wait, or how much time Vinnie has, makes it even harder.”
Vinnie was born with hypoplastic left heart syndrome (or HLHS), which means one side of his heart did not develop properly in the womb and is too small to pump blood.
The condition affects one in 5,000 babies and without intervention, it would soon be fatal. Medical advances mean many kids with HLHS survive to adulthood.
Children with the condition need several ops when they are young to re-plumb their arteries into a single circuit, so the stronger right side of the heart can pump blood around the body.
Claire says: “Nothing prepares you to see your baby all wired up, his life in the hands of the medics who care for him around the clock. It really hit home what we were up against.”
Vinnie had his first open heart surgery when he was 48 hours old and his second aged six months. Both times he made a quick recovery, but his third major op at three years old did not work as planned and his heart function plummeted.
Attempts to improve Vinnie’s condition with medication failed and in December last year, doctors warned his only hope was a transplant.
On top of that, surgeons would have to insert a tube into Vinnie’s heart to carry out tests to check he was a suitable candidate for a transplant.
The tests are usually considered routine, but Vinnie’s heart was so fragile they feared he might not survive.
Claire, who quit her job as a teaching assistant to care for her son, says: “It was so hard to accept because on the outside, we couldn’t see him deteriorating. He was still running around and looked like he was doing so well, but inside his heart function was failing.”
Being given the news in the middle of a global pandemic made it even more difficult.
Visiting restrictions introduced to limit the spread of infection meant only one of Vinnie’s parents were allowed in to the hospital at a time.
It meant dad Ben, 42, had to hear the devastating diagnosis over the phone.
Claire says: “Going through that on my own without Ben by my side was awful. I was on my knees, but I had to hold it together for Vinnie.
“As soon as I was alone, I locked myself in the toilet and broke down. I was screaming and crying.”
Unable to hug her husband for comfort, Claire called the Little Hearts Matter charity. Based in the family’s home city of Birmingham, the organisation supports youngsters born with single ven-tricle hearts and their relatives. Claire says: “I needed to speak to someone who understood what I was going through.
“I don’t know what I’d have done without that support.”
When Vinnie was taken to the operating theatre, crane firm owner Ben could only say goodbye in a video call.
Claire says: “That must have been so hard for Ben. We didn’t know if we would ever see Vinnie again.
“I sat by his empty bed on the ward, waiting for him to come back, terrified he wouldn’t. When I heard footsteps approaching, my heart stopped.
“I thought they were going to give me bad news. I was so relieved when they smiled and said two words – ‘He’s alive’.”
Several days later, they were allowed home for Christmas as family and friends rallied round to sort out a tree, presents and festive donkey rides for Vinnie. “It was a very emotional, but very special Christmas,” Claire says. “It was such a relief to have Vinnie home after everything we had been through.
“We were determined to make the most of it because we didn’t know what would happen next.”
Two weeks later the family were sent to the Freeman Hospital in Newcastle for a full transplant assessment.
Vinnie was considered a suitable candidate for a new heart and he joined the waiting list in January this year. In doing so, he leapfrogged his friend Harry Lee, also from Birmingham, whose wait for a transplant featured on the Mirror’s front page in 2019. The families met through Little Hearts Matter.
Harry, now six, who was also born with HLHS, suffered a stroke after heart surgery failed. He spent three months fighting for his life before making it home just in time for Christmas in 2018.
Harry defied doctors’ expectations and although he still needs a transplant, his heart has remained more stable than anticipated. He has learned to walk and talk again after the stroke and recently started his second year in a mainstream school.
Meanwhile, Vinnie takes nine different medications every day and needs regular check-ups. His condition makes him more vulnerable than other children, so taking him to hospital during the pandemic has been an ordeal.
Vinnie has to wear a face shield, gloves and protective clothing in hospital to minimise the chances of catching coronavirus. When outdoors, he also wears a fluorescent jacket asking people to keep their distance.
Docs have advised the family to make the most of their time together and, despite their problems, Vinnie went on his first ever holiday this summer – a trip to the Cotswolds.
Claire says: “We’ve been desperate to go away for so long, but something always got in the way. Either Vinnie was poorly or he needed an operation, then lockdown happened.
“Vinnie was so excited. He loved it.” The family are now anxiously waiting for a call to tell them a heart is available.
Claire says: “Our bags have been packed since January. I jump every time the phone rings. You immediately wonder if it’s the hospital.” The Mirror’s Change the Law for Life campaign led to the introduction of a new opt-out organ donor register last year to reduce the number of people who die waiting for transplants.
But the new law does not apply to organs from children. These organs are in such short supply Vinnie is likely to have to wait two-and-a-half times longer for a new heart than an adult would.
Claire says: “Anyone whose child needs a transplant will tell you that’s the hardest part – knowing another child has to die before yours gets the gift that will help them live.”
This week Vinnie has taken presents to school for his new classmates to raise awareness of his heart condition during Organ Donation Week.
Claire says: “It’s so important people talk about organ donation so their families know their wishes if the unthinkable happens and they don’t have to make a decision through a fog of grief. The lives of children like Vinnie depend on it.”