Thursday, January 17, 2008

Katie Thorpe's Womb Saved Thanks to Disability Activists (title FRIDA's)

From today's Daily Mail in the UK:

Doctors turned down mother's request to remove disabled daughter's womb 'because of charity backlash'
Last updated at 12:21pm on 17th January 2008

A mother who asked to have her disabled daughter's womb removed said a negative backlash from charities has caused doctors to refuse to operate.

In a landmark case Alison Thorpe, 45, asked for her 15-year-old daughter Katie to undergo drastic surgery to prevent her from the "pain, discomfort and indignity" of menstruation.

The debate sparked fierce criticism by groups such as Scope which said Katie should not be sterilised because it would be "very painful and traumatic" and was "not medically necessary".

Ms Thorpe, a mother-of-two from Billericay in Essex, has been told that doctors at the Mid Essex Hospital Services NHS Trust have refused to consider operating without a "clinical reason".

Ms Thorpe said: "They have said the would not consider putting the plan in place at the moment and when Katie starts her period they would be prepared to consider if there is any clinical reason for the procedure.

"Which means that if and when Katie does start her periods she could endure months and months of pain and discomfort before anything is done."

Katie Thorpe, 15, suffers from severe cerebral palsy and needs round the clock care. The terminal condition has left her unable to walk or talk, confined to a wheelchair and double incontinent.

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.

Ms Thorpe, who lives with her 12-year-old daughter Melissa and 52-year-old partner Peter Reynolds, said: "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."

She added: "I'm hoping common sense will prevail and the Trust will not be swayed by the disability rights groups.

"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 starting but Ms Thorpe ruled them out because of the risk of the wheelchair-bound daughter suffering from thrombosis.

Ms Thorpe has been liaising with consultant gynecologist Phil Robarts from St John's Hospital in Chelmsford and was originally hopeful they would operate on her daughter to remove her womb and her appendix because she feared Katie would not be able to tell anyone if she suffered an appendicitis.

She said: "It was an agonising decision to make, as with every decision, I questioned myself endlessly 'Am I doing the right thing?'.

"It is a decision I made probably about two years ago when she was 12 or 13-years-old. It's taken me about 13 years to consider it, to consider the pros and cons, the advantages and the disadvantages.

"It (the operation) would prevent her going through the mood swings, the discomfort and the indignity of it all.

"If Katie had stomach cramps she wouldn't be able to say 'Mum I've got really bad period pains' she would be in pain and we wouldn't know.

"There would obviously be short term discomfort, as with any operation, but we could manage that with painkillers. The short term discomfort would be more than outweighed by months or even years without pain."

Despite being "disappointed" by the decision she has written to the 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."