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Ethan at home with mum Marion and older sister Tamsyn |
The happy toddler with half a heart and two life-saving operations still ahead of him
We take it day by day, says mother of boy who will need transplant in his teenage years
HE is the boy with only half a heart – but a bundle of love. Just 16 months old, Ethan Alston has been under general anaesthetic six times and undergone two life-saving operations.
Yet his mother Marion told the New Journal on Tuesday how, even after all this, her remarkable son still faces a battle to stay alive.
The bare facts are painful: in this country those diagnosed with Ethan’s ultra-rare defect – single ventricle heart condition (SVHC) – are unlikely to live until adulthood. Only a series of operations offers any hope.
For now, Mrs Alston is counting her blessings that the smiling baby boy has got this far.
“We were told that without surgery immediately after birth he would die and there was a one-in-five chance he could die during that surgery,” she said. “A lot of children born with this condition do die, either at birth or later in life, and many people do take the decision to terminate during pregnancy. But it was not difficult for us to keep Ethan.”
At home in South End Green this week, mother and son and Ethan’s older sister Tamsyn seemed like any other happy family. The only thing on Ethan’s mind was his toy train as he rolled across his play-mat, burping and gurgling.
His diagnosis is unusual, his heart having developed only one ventricle in the womb.
Mrs Alston said: “It is one of the rarest and the most severe heart conditions. In terms of long-term prognosis, it’s difficult to say. He will always be on medication and it is likely he will need a heart transplant. Children in this country haven’t had that kind of surgery before. The availability of hearts is an issue and organ donors are something we will need.”
Mrs Alston, who works as a speech therapist at the Royal National Nose, Throat and Ear Hospital, in King’s Cross, said: “There are message boards on the Little Hearts Matter website for parents with children with the same condition. It really helped to be in touch with the other families. There was a section for bereavement, but we tried not to look at that.
“There were two girls being born somewhere else at the same time as Ethan – they both died. It is hard to complain about how we are feeling now when other parents have gone through something much worse.”
Ethan needs three life-saving operations which will effectively “rewire” his circulatory system. He came through the first two and the next one will be arranged when he is between three and four years old.
Mrs Alston described how her five-and-a-halfmonth-old son spent a month in hospital when his heart failed. “That was hard on his sister,” she said.
Ethan is almost certain to need a heart transplant when he is a teenager. The surgery will be made more complex because of the earlier operations.
Mrs Alston and her husband have no history of heart problems in their families. Ethan’s condition was “simply down to the spin of the wheel,” she said.
“He is always a little blue and he gets tired and breathless – but he will be able to go to school with other kids. I don’t think he will be able to play sport, because of his tiredness and breathlessness. We just have to take it day by day and enjoy it for now. At first I was too worried to take him out but now we go out a lot.”
Ethan has started going to a nursery and took his first few steps this month. He is happiest when with his “sailor bear”.
She said: “It’s a real blessing that he looks just like any other baby boy. No one knows any different and he goes to nursery. But it’s frustrating when people think everything is OK too – he is going to have to have major open-heart surgery and we are constantly worried about him heart-wise and looking for symptoms or complications.
“He has had six general anaesthetics since he was born. You can never be prepared to let your child go at the operating doors. You never know what that’s going to feel like.”
She added: “I am extremely proud of him. He’s doing everything he should be doing. He is a chubby little chap and has developed a strong will. He is giggling and laughing and doing all the things he should be doing and that gives me a sense of pride. He really is gorgeous. I couldn’t imagine not having him around.”
To mark International Congenital Heart Disease Day, which coincides with Valentine’s Day, Ethan’s family and nursery have organised a cookie-bake fundraiser for Little Hearts Matter.
Suzie Hutchinson, director of Little Hearts Matter, said: “Imagine what it must be like having to live with only half a heart.
“Every penny raised can go to help the children, and their families, as they struggle with the challenges a heart condition brings every day.”
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