Watching Vinnie Holliday enter school for the first time should have filled her mother 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 a working half heart, needs a life-saving transplant.
The four-year-old is one of 200 children awaiting transplants.
And because donor organs are so scarce, he could wait up to three years for a new heart.
Speaking of Vinnie’s first day of school last week, Claire, 40, said: “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 that day when he was born. But the worry that he desperately needs a heart transplant is still on my mind.
“Vinnie started asking questions about her new heart. It’s always at bedtime that we cuddle. I tell him it’s 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 long Vinnie has, makes it even more difficult.”
Vinnie was born with hypoplastic left heart syndrome (or HLHS), which means that one side of his heart has not developed properly in the womb and is too small to pump blood.
The disease affects one in 5,000 babies and without intervention it would soon be fatal. Medical advances mean that many children with HLHS survive to adulthood.
Children with the disease need several operations when they are young to reconnect their arteries into one circuit, so that the stronger right side of the heart can pump blood throughout the body.
Claire says, “Nothing prepares you to see your baby all wired up, his life in the hands of the doctors looking after him around the clock. It really hit home what we were up against. “
Vinnie underwent his first open heart surgery at the age of 48 hours and the second at the age of six months. Both times he recovered quickly, but his third major surgery at the age of three did not work as expected and his heart function collapsed.
Attempts to improve Vinnie’s condition with medication failed, and in December of last year, doctors warned her only hope was a transplant.
On top of that, surgeons would have to insert a tube into Vinnie’s heart to perform tests to verify that he was a suitable candidate for a transplant.
Testing is generally considered routine, but Vinnie’s heart was so fragile that they feared he would not survive.
Claire, who quit her job as a teaching assistant to take care of her son, says: “It was so hard to accept because on the outside you couldn’t see him deteriorating. He was still running and looked like he was doing so well, but inside his heart function was failing.
Getting to know the news in the midst of a global pandemic has made it even more difficult.
Visiting restrictions introduced to limit the spread of the infection meant that only one of Vinnie’s parents was allowed into the hospital at a time.
This meant that dad Ben, 42, had to hear the devastating diagnosis over the phone.
Claire says, “Living this alone without Ben by my side was awful. I was on my knees, but I had to hold on 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 Birmingham, the family’s hometown, the organization supports young people born with a single ventricular heart and their loved ones. Claire says: “I needed to talk to someone who understood what I was going through.
“I don’t know what I would have done without this support.”
When Vinnie was taken to the operating room, crane business owner Ben was only able to say goodbye to him on a video call.
Claire says, “It must have been so hard for Ben. We didn’t know if we would ever see Vinnie again.
“I sat by his empty bed in the room, 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 to return home for Christmas as family and friends gathered to sort a tree, gifts and festive donkey rides for Vinnie. “It was a very emotional Christmas, but very special,” says Claire. “It was such a relief to have Vinnie at home after everything we had been through.
“We were determined to make the most of it because we didn’t know what was going to happen next. “
Two weeks later, the family were sent to Freeman Hospital in Newcastle for a full transplant evaluation.
Vinnie was considered a suitable candidate for a New Heart and he joined the waitlist in January of this year. In doing so, he edged out his friend Harry Lee, also from Birmingham, whose wait for a transplant made the front page of the Mirror in 2019. The families met via Little Hearts Matter.
Harry, now six, who was also born with HLHS, suffered a stroke after failed heart surgery. He spent three months fighting for his life before returning home just in time for Christmas in 2018.
Harry defied the doctors’ expectations and although he still needed a transplant, his heart remained more stable than expected. He relearned to walk and talk after his stroke and recently started his second year at a regular school.
Meanwhile, Vinnie takes nine different medications each 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 a hardship.
Vinnie should wear a face shield, gloves and protective clothing in the hospital to minimize the chances of catching coronavirus. Outside, he also wears a fluorescent jacket asking people to keep their distance.
Doctors advised the family to make the most of their time together and, despite their problems, Vinnie left for his first vacation this summer – a trip to the Cotswolds.
Claire says, “We have desperately wanted to leave for so long, but something always got in our way. Either Vinnie was bad or he needed surgery, and then the lockdown happened.
“Vinnie was so excited. He loved her. ”The family are now eagerly awaiting a call to tell them that a heart is available.
Claire says: “Our bags have been ready since January. I jump every time the phone rings. We immediately wonder if it is the hospital. The Mirror’s Change the Law for Life campaign led last year to the introduction of a new exclusionary organ donor registry to reduce the number of people who have died awaiting transplants.
But the new law does not apply to children’s organs. These organs are so rare that Vinnie will likely 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 this is the hardest part – knowing that another child has to die before yours receives the gift that will help them live.” .
This week, Vinnie brought gifts to school for her new classmates to raise awareness of her heart disease during Organ Donation Week.
Claire says, “It’s so important for people to talk about organ donation so that their families know their wishes if the unthinkable happens and they don’t have to make a decision in a fog of grief. The lives of children like Vinnie depend on it.