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Harrison Sharman was born with only half a heart, but despite all the odds he will celebrate his first birthday this month.
His mum, Melanie, 33, of Middle Deal Road, said she will buy him a two-tiered cake and have a family bash for her “little warrior” on Wednesday.
When Melanie was pregnant with Harrison, she was told there would be some complications.
At first, she did not know whether he would have Down’s Syndrome or a hole in his heart – the same condition Melanie was born with.
Then doctors at St Thomas’ Hospital in London told her it was much worse than this. Her baby would have a type of congenital heart disease called hypoplastic right heart syndrome and an intact ventricular septum.
This means the right side of his heart is underdeveloped and he essentially only has half a heart. It is the most severe form of congenital heart disease and very rare.
Melanie said: “I still remember that day. I was in floods of tears. I just couldn’t take it in. They said ‘do you want to continue?’ and I said ‘yes, I’m a Christian’ and I thought, ‘if he wants to be here I will give him that chance’.
“It was a difficult pregnancy because I was told he could pass away at any point. I was listening for his heartbeat all the time. I was waking up in the night and panicking, but we got through it.”
Harrison was two weeks premature. As soon as he was born, Melanie was allowed a quick cuddle before he was taken away to be given a drug called prostaglandin to keep a duct open in his heart.
She said: “When he was stabilised he had his first open-heart surgery at six days old, which was so scary and hard for me. He pulled through and had his second lot of open-heart surgery at just under four months old.”
When he is two-and-a-half years old Harrison will need to undergo one final heart operation, but for now, Melanie is enjoying her time with her little boy.
She said: “He’s always so calm, he’s just amazing and so active and smiley.”
But life can be difficult for Harrison, and Melanie has to watch over him 24 hours a day.
“I’m Harrison’s carer, he has to sleep in my room. He has coughing fits and can turn blue and can be sick. I have to jump out of bed and help him. You have to be on your toes.
“He’s started crawling now. He gets out of breath just crossing the room, but he still tries. He’s going to be a feisty one, he’s always been a little fighter.”
Melanie has eight children, four of whom live with her ex-husband in Northampton, and four who live with her in Deal, including Harrison.
She moved back to Deal three years ago after separating from her husband. Her mum, Audrey, 73, who moved back to Deal two years ago, has been very supportive.
Melanie said: “She’s my best friend. She’s always been there.”
"Every moment is precious and he is an amazing boy. Who could have thought you could survive with only half a functioning heart? Amazing!" - Melanie.
When Harrison reaches his teens or early 20s, Melanie has been told it’s very likely he will have heart failure and will need a transplant.
“It would mean the world [to get a heart] but it’s sad to think somebody else has to pass away for him to have that. I’m really dreading it, but I just hope and pray, and keep my faith.”
Melanie said it is so important that people register to be organ donors and to raise awareness of congenital heart disease.
She said: “Everyone always thinks it’s cancer which is the biggest killer, but it isn’t and there needs to be more awareness about it.
“I might need surgery in the next five years as I have a leaking valve. I’m always trying to raise awareness and donating to the British Heart Foundation and helping out at the shop in town, taking clothes, and having yard sales. It affects so many people.”
Melanie has praised the Salvation Army for their support and the staff at Evelina Children’s Hospital, and says she is forever in debt to St Thomas’ Hospital, which saved her boy’s life.
She said: “I never thought I would be privileged enough to have such a special little boy. Every moment is precious and he is an amazing boy. Who could have thought you could survive with only half a functioning heart? Amazing!
“There are children with heart conditions losing their battles every single day. So I treasure every single moment with Harrison.”