Op would stop Jessica from choking.. but it may kill her
Jessica can’t swallow due to illness
A FAMILY are heartbroken after being told a vital operation that would stop their daughter from choking might also kill her.
Claire and Martin Greenwood’s daughter Jessica, 11, has a rare genetic disorder which means she is unable to swallow and is at constant risk of choking on her own saliva.
She has to be treated with a suction machine around the clock, which mum Claire, 35, says is “like having four Covid tests an hour”.
The family ’s world collapsed last year when medics told Claire and Martin, both 36, from Dreghorn, Ayrshire, that not only did Jessica have the terminal condition pontocerebellar hypoplasia, but so too did their 12-year-old son Liam.
The couple had hoped that Jessica could undergo a procedure which would enable her to swallow, but medics told them that the risk of her dying on the operating table is high.
Claire told the Record: “At the moment, Jess is confined to a wheelchair, fed through a peg and we have to use the suction machine on her constantly, otherwise she would choke on her saliva.
“I recently had a Covid test and it was not pleasant to get that swab down the back of the throat and I thought, ‘My poor Jess has to have this four times an hour’. Can you imagine having four Covid tests every hour?”
Claire said she and Martin have been left with “an impossible decision” on what is best for their daughter. She said: “The doctors can perform this operation which will mean she can swallow for herself. She would be able to enjoy life so much more. She would be able to sleep at night without being constantly disturbed.
“But they told us because Jess’s condition is so severe there is a very high risk that she would not make it through the operation. What do we do? Risk her life to give her a better quality of life? It’s an impossible decision.”
The illness is caused by mutations in genes passed on from parents. It has left Jessica unable to walk or talk and she is receiving palliative care.
Liam’s condition is less severe at the moment but the youngster, was this week diagnosed with a cyst on his leg which Claire fears could lead to him being wheelchair bound too.
The family are awaiting the results of a biopsy which will determine whether he needs surgery to remove the growth.
Claire added: “Liam is still a very active wee boy and we want to keep him that way. I am just terrified this is the beginning of his deterioration.
“It’s been a rough ride recently, we are just always hoping for a bit of good news. We can only hope.”
NHS Greater Glasgow and Clyde declined to comment.
She would be able to enjoy life but there is a high risk CLAIRE GREENWOOD ON DAUGHTER JESSICA