Family hope Otto can avoid hospital
Liz Coates THE family of little Otto Smith hope a new drug and feeding regime will stave off the threat of long-term hospitalisation until a new donor heart is found.
THE family of little Otto Smith hope a new drug and feeding regime will stave off the threat of long-term hospitalisation until a new donor heart is found.
After four months on the waiting list, his parents Isabel and Richard Smith are doing their caring best to keep him at home and away from London's Great Ormond Street Hospital where he faces being hooked up permanently to a machine that takes over the job of his enlarged heart.
The condition - dilated cardiomyopathy - has already meant a transplant for older brother Sam now, 17, and tests and treatment for other members of the family including the boys' mother.
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The three-year-old was able to spend Christmas at home in Browston after a spell in hospital to treat a chest infection and add weight to his tiny frame, improving his chances of being offered an organ from a wider range of donors.
Since Otto's condition deteriorated the family's life has been put on hold, mingling only with close relatives to minimise the chance of infection, shopping mainly on-line.
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Meanwhile Otto is said to be in good spirits but frustrated at not being able to play normally, his routine governed by feeding and medicine.
Mrs Smith said: “He has been going down every two weeks to the clinic. But he has been really poorly. He lost a lot of weight that he could not get back on. Every bit of food he had his heart was burning off because it is working over time.”
She explained the family went down to Great Ormond Street for a routine check up before Christmas but doctors decided to keep him in to deal with the chest infection and weight loss.
She added: “We are praying that we can keep him out of hospital. If that does not work then the next thing is the Berlin heart machine. We are just glad he was well enough to be home for Christmas. He is in good spirits but he wants to play normally and cant.”
Older brother Sam's heart transplant ordeal is now firmly behind him, his amazing bounce-back to health an inspiration to Otto. The 17-year-old hairdressing apprentice takes five tablets in the morning and five at night. He said he had to be watchful of cholesterol but otherwise lead a normal life.
The family is keen to raise the profile of the NHS Organ Donor Register. To find out more call 0845 6060400 or visit www.uktransplant.org.uk