Hysterectomies for severely disabled girls

Ashley X(Seattle): A severely disabled girl was operated upon at the request of her parents, to prevent her from growing, menstruating and developing breasts. The principal purpose of the treatment was to improve Ashley’s quality of life by limiting her growth in size, eliminating menstrual cramps and bleeding, and preventing discomfort from large breasts. After a year, Ashley’s parents consider her treatment a success: an estimated reduction of her potential height and weight of 20% and 40% respectively. The hospital later admitted that the surgery was illegal and should only have been performed after a court order (a position that is disagreed upon by the attorney of Ashley’s family).

Angela (Australia): A family court in Queensland has granted permission for an 11-year old girl to undergo hysterectomy operation which means removal of the womb. Three leading gynecologists also feel that hysterectomy is the only solution in this case. The parents of the girl have said that the girl suffers from epileptic fits during her menstruation and has to go through hell – the disease she is afflicted with is the Retts Syndrome. She is unable to communicate and behaves like a 3-month old baby. Angela’s disorder makes her profoundly disabled and unable to talk or use sign language. She has to be fed and cared for and has no bladder control. She has a special walking frame she has to be strapped into, and has a person to help her.

Queensland Liberal Senator Sue Boyce, a disability rights advocate : “Every Australian would be appalled if an 11 year old girl without a disability was sterilised with legal blessing. It’s completely discriminatory and inhumane to treat a girl with a disability any differently,” she said. “I know of young women with a disability who have wanted a baby and have then discovered to their horror that they had been sterilised when they were a child. The only reason for courts to get involved in the sterilisation of any minor or any person with a disability must be a life-threatening illness.”

Katie Thorpe (UK):

The mother of a severely disabled girl is seeking permission from the Court for her daughter to undergo a hysterectomy, to protect Katie from the “pain, discomfort and indignity” of menstruation. 15-year-old Katie, who cannot walk or talk and is believed to understand little of what is said to her, is unable to give consent. Doctors initially suggested contraceptive pills and injections to stop Katie’s periods starting but Ms Thorpe ruled them out because of the risk of her wheelchair-bound daughter suffering from thrombosis.

Simone Aspis, of the United Kingdom’s Disabled People’s Council, said the operation was “unacceptable” when Katie could avoid menstruation through alternatives such as the Pill. “Katie, like any other nondisabled teenager, has the right to grow up with her body intact, and where she can have the same choice as anyone else to give birth to her own children.” She added: “We know of plenty of disabled people both with physical impairments and learning difficulties who give birth to their children and are great parents. This is nothing more than eugenics and abuse of Katie’s human rights.”

Paul Hardiman, a consultant gynaecologist at the Royal Free and University College London, said the matter was not black and white. “I think you have to balance the protection of her human rights against the distress she is going to suffer if something isn’t done,” he said. But he added that a hysterectomy was a radical and irreversible procedure that should only be considered as a last resort because less invasive options were available.

Faced with a patient in similar circumstances this year, Dr Hardiman recommended a device that releases hormones when it is inserted into the womb, slowing down or stopping menstruation. “It is as effective as sterilisation. but a key issue is that it is also reversible. A hysterectomy seems such a major and final thing to do to somebody.”

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One Response to Hysterectomies for severely disabled girls

  1. GM says:

    Those fighting against the parents should walk a few days in their shoes. It’s one thing to have a disability, but it’s another to be profoundly disabled to the point you have no hope of ever caring for yourself. In such cases as these, exactly how would these young people be able to understand pregnancy, much less parenting? How horrible would it be for these girls to go through pregnancy and delivery with their limited understanding. When a young adult cannot communicate or understand what is being said to her, how on earth could she ever be a parent? How is this infringing on her rights if she can’t understand the concept of being a mother? Ludicrous! To think that anyone not in the position of parenting a profoundly disabled child has the right to judge the decisions of parents who are is sickening. They can go home at the end of the day and wallow in self-congratulations on all the good they’re doing, while these mothers are changing diapers of teens and dealing with behavior problems like sticking hands in dirty diapers day after day, year after year. So what if Simone Apsis knows someone who wanted a child? That sure shouldn’t apply to Katie since this girl is obviously much more disabled than whomever Simone feels vindicates her self-righteous and small-minded position. As a mother with a disabled young adult, I hope both these families get to have these surgeries.

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