Alison Thorpe had hoped surgeons would operate on 15-yearold Katie, who has cerebral palsy, to prevent her from the "pain, discomfort and indignity" of menstruation.
But disabled rights groups said the teenager - who cannot walk or talk and is incontinent - would be put through unnecessary pain.
Yesterday it emerged that doctors have told Miss Thorpe, from Billericay, Essex, they would operate only if there was a medical reason to do so.
"This means that if and when Katie does start her periods she could endure months and months of pain and discomfort before anything is done," she said.
Katie's plight echos the controversial case of nine-year-old Ashley X in America who underwent breast bud removal and hormone treatment to keep her in a child like state, small and manageable for her parents who care for her.
But Miss Thorpe believes the Mid-Essex Hospital Services NHS Trust has been swayed by the outcry from some quarters, including the cerebral palsy charity Scope.
She said: "I think the Trust has bowed down to what they perceived to be public opinion.
"But I have had overwhelming support from the public, both able-bodied and disabled people.
"The only opposition has been from disabled rights movements but I would say to them, 'Come and spend a week with me, walk in my shoes'. I've spent 15 years with my daughter, as a mother who loves her dearly I am trying to do the best I can for her.
"I think the Trust has bowed down to what they perceived to be public opinion, that is my personal belief. I have had overwhelming support from the public, both able bodied and disabled people.
"I feel the trust misread the so-called lack of support from the minority, groups such as Scope.
"I have not had any contact with any (disability) organisation, they do not know me or Katie. They have not provided any support or help for us as a family.
"I am not surprised by what they said but in in the way they said it. They have not been made aware of any of the facts in his case, they made up their mind before hearing the other side of the story, without referring to us.
"I don't want to take away disable people's rights, I want to give them choice."
Doctors initially suggested contraceptive pills and injections to stop Katie's periods but Miss Thorpe ruled them out because of the risk of thrombosis for her wheelchairbound daughter.
Consultant gynaecologist Phil Robarts, from St John's Hospital in Chelmsford, had discussed the options with Katie's mother.
Miss Thorpe hoped doctors would also remove Katie's appendix as it might not be apparent if she suffered appendicitis.
The Trust now says it cannot justify surgery on the grounds suggested by the mother.
However, Miss Thorpe, who lives with partner Peter Reynolds, 52, and has another daughter, 12-yearold Melissa, has written to the Trust's non-executive directors asking them to put a plan into place to operate as soon as Katie starts her periods.
She added: "It's one of those things, life with a disabled child is one long battle and this is just another step down the ladder."
"It was not unexpected. It means we move to stage two and carrying on fighting."
Sharon Collins, an executive director at Scope, said: "An irreversible procedure of this nature that is not clinically necessary is not the right way forward."
Source: DailyMail-January 17, 2008
1 comment:
Very helpful piece of writing, much thanks for the article.
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