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Why I want surgeons to remove my disabled daughter's womb
Last updated at 07:22am on 08.10.07Surgeons are planning to remove the womb of a severely handicapped teenager because her mother is concerned at the distress she will suffer from menstruation.
A consultant has backed a request for the operation on Katie Thorpe, 15, who has cerebral palsy and cannot walk or talk.
Doctors are waiting for hospital legal experts to approve the surgery.
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Controversial: Alison Thorpe wants her disabled daughter to have her womb removed as she doesn't think she'll cope with adulthood
It is understood to be the first time such a procedure has been carried out in the UK without the patient's consent.
The case is likely to provoke an ethical storm over performing non-emergency surgery for social reasons on those who cannot choose for themselves.
Katie developed cerebral palsy after being starved of oxygen at birth for 38 minutes.
She has the mental capacity of an 18-month- old and understands little of what is said to her.
While capable of showing emotions, she is unable to communicate what she feels.
The teenager has not started menstruating yet, and her mother, Alison Thorpe believes the mood swings and physical aspect of periods will only add to her distress and loss of dignity.
Miss Thorpe said: "This is not about us. It's about Katie's quality of life.
"She is doubly incontinent and going through menstruation would only add to her discomfort.
"She is never going to develop and be a normal adult with the expectations of getting married and having children.
"She is my daughter and of course there are doubts.
"But I feel the short-term inconvenience she will go through is nothing compared to the enormous long-term gain."
Mother-of-two Miss Thorpe, 45, of Billericay, Essex, separated from Katie's father 12 years ago.
She lives with her partner of seven years Peter Reynolds, 52.
Both help clean, dress and feed Katie, who needs 24-hour attention.
A carer helps them for three to four hours each day.
Miss Thorpe said Katie's father plays no role in her life.
She approached her GP two years ago about the operation and was referred to Phil Roberts, a consultant gynaecologist at St John's Hospital in Chelmsford, who recommended the contraceptive pill or injection.
Miss Thorpe rejected this as she was concerned about medical complications, particularly the risk of thrombosis in those with little or no mobility.
Katie is confined to a wheelchair.
She said that during a second consultation in August, Mr Roberts agreed to support her request for surgery.
Miss Thorpe has also asked for Katie's appendix to be removed because she is incapable of reporting early symptoms, leaving her at risk of life-threatening complications if it bursts.
Mr Roberts consulted other specialists, who backed his view, and has now referred the matter to NHS lawyers for approval.
He said: "I think the girl's mother makes a very cogent argument for proceeding with that course of action, albeit it is rather drastic."
The case mirrors that of a nineyearold American girl, known as Ashley X, who was given drugs to stunt her growth and had her womb and breasts removed in 2004.
Her parents argued the treatment would improve her comfort and that having a smaller, lighter body would make it easier to involve her in family activities.
But campaigners argued society should change to accommodate the disabled, rather than the other way round.
Andy Rickell of disability charity Scope said of Katie's case: "It is very difficult to see how this kind of invasive surgery, which is not medically necessary and which will be very traumatic, can be in Katie's best interests."
Miss Thorpe added: "I am not saying there should be a blanket policy of hysterectomies for children like Katie.
"I am talking about my 15-year-old who I know better than anyone else on earth."
Cerebral palsy affects around two children in every 1,000 live births. It is caused by damage to the motor control centres of the young, developing brain.
• In principle, there is no legal barrier to the operation going ahead once the doctor and the legal guardian, in this case Katie's mother, have given their consent.
Consultant Phil Roberts has asked his trust's lawyers to make absolutely certain of the position. Campaigners suggest the case may raise a human rights question - have those of Katie been properly respected?
Scope recognises there are no clear safeguards in place to stop such procedures. It is calling for the Government to clarify the law by setting up the right to an independent advocate who can adjudicate on such matters and speak for children such as Katie.
Reader views (19)
Here's a sample of the latest views published.
I am a 24 year old severely disabled woman myself and I have Cerebal Palsy so I have the same condition as Katie but I am not intellectually affected at all. I am on the 'no' side. For one thing I think they should try everything else such as the pill, the coil and all they can before they go and have a huge operation. They should wait untill the menstruation starts to see how it affects Katie, because some people aren't in discomfort at all. I know that it's important that she only has the capacity of an 18 month old but she is still a woman and she is still a girl and if they do this, in my opinion, they take away her whole womanhood and in my opinion that's wrong, No matter how old the person is. I understand that they want to spare her the pain and the discomfort but I don't think that this is the answer, there are lots of easier ways to stop her menstruation.
I think an independent advocate would be good so even though Katie might not understand she might have a chance to indicate what her understanding is and what she wants.
I know I'm not an intellectually disabled person but I know if I grew up without a womb I wouldn't be happy with my parents at all. Now maybe it's different for an intellectually disabled person but I feel everybody deserves a say no matter who they are, what they are or what they have.
I understand where the parents are coming from: they love and want to protect their child, but I think everybody concerned should think about Katie's wishes.
- Ciara, Ireland
I am a woman and have been severely disabled since birth. It is my experience that both the medical profession and society at large are willing to advocate elective procedures for the disabled which are unadvised for non-disabled people. It is the burden of the person with a disability to prove their right to use their body as it is, particularly their sexuality. I am profoundly grateful that I am able to communicate, and therefore able to protect my rights as a member of society.
- A, Portland, Oregon, USA
I've been a carer, albeit briefly, for two severely handicapped women. In the cases of these individuals, their menstrual cycles didn't seem to bother them at all. I would suggest that maybe the decision should be left until after the periods start and they see how well their daughter copes with it. Changing someone else's sanitary towel/incontinence pad is deeply unpleasant but not sufficient grounds to have someone's womb removed.
- Claire, London
This mother is right to ask for this operation. My 16 year old daughter has such bad periods every month and cries because the pain is so bad. What would happen if she could not tell me that she was in pain? I would never know and she would be suffering the pain alone.
I agree with what this mother is doing and maybe she should consider a hysterectomy to save the young girl from many years of smear tests. This woman is very strong to have coped with what has happened to her family and we are not here to judge her, but to offer our support.
Not one person can say what they would do unless they were in that situation. The mother knows what is best for her daughter.
- Mary, Dagenham, Essex
As a parent who provides 24 hour care for my son with a severe TBI I know that the decision made by Katie's mother has been difficult and well thought out. I applaud her for the care she provides for her daughter and totally support her decision. No one outside her situation can truly appreciate the issues she has to deal with and this is certainly one on which she deserves our total support.
- Frank, Denver, USA
All those of you who say the operation should not be performed need to put yourself in Katie's mother's shoes. Can you cope with such a situation where you have no life of your own and need to care for someone 24/7? The sheer physical and mental exhaustion of what her mother is going through cannot be understood by anyone else. How can anyone wish that Katie should put up with period pains and discomfort; and for what? Her mother is already coping with her incontinence problem and normal excretory functions. Are any of you ready to change another person's soiled sanitary napkins month after month? If not you have no right to voice your opposition. In fact the doctors themselves should suggest to all such parents to have a hysterectomy performed on their disabled child and it should be legal.
- A, Alaska
It's unlikely that Katie will get pregnant and have to deal with motherhood; with the greatest of respect she will probably never have a boyfriend given her immature social skills. I can understand that her mother and stepfather want to spare her the indignity of their having to change her sanitary wear once she starts to menstruate but I am not sure that a major op under general anaesthetic is warranted given that Katie is probably incapable of feeling embarrassment. I am on the "no" side, but for practical reasons rather than moral ones.
- Rd, Glamorgan, UK
Well said Bill. I also note that Andy Rickell's comment is woefully unsympathetic and typical of a man who has no idea of, and has chosen not to imagine, the difficulty of menstruation for normal women, let alone that of a severely disabled woman. I can't believe he had the nerve quite honestly.
- Isabel, Woking, England
How can anyone suggest that the parents are not doing what is right for the child. You can see that they are devoted to her. I am incensed that SCOPE and anyone else are challenging both the parents and the doctors whose care she is under.
- Janice Grant, London, UK
I think it is disgusting that nearly all of the 'experts' and spokesmen for Scope etc are MEN! They do not have the slightest clue what a woman's body goes through during mensturation. Extra help or money will not help at 3am when the young lady needs to be changed and cleaned. Nor will it help if a male member is looking after her and her period starts unexpectedly. Mind your own business and let her family and medical team make the right decisions.
Good luck to the family, you sound as if you only have Katie's best interests at heart. I hope Katie enjoys a happy life-I'm sure she will.
- Sue, Oxford, UK
Who has the right to criticise these parents? Surely they know what their daughter can and cannot cope with in this life and if there is something available which will make this little girl's life a little easier who are we to say that she cannot have it? Leave it to the doctors and the parents - they are living with this.
- Rachel, London, UK
What on earth gives Scope any right to interfere in other people's lives in this way? One of the most appalling aspects of current society is the way self-appointed groups attempt to interfere in issues that are not their concern; about which they know nothing; and where they can offer no practical help.
Scope should have the basic decency to keep quiet and leave this issue to those actually involved in it; and who have to deal with it.
- Bill Fuller, London, UK
This elective medical procedure would be unthinkable if proposed by the mother of a non-disabled girl. The only thing which makes this conceivable is the girl's disability, and her subsequent inability to advocate for her own rights. It is quite clear that we cannot accurately judge the mental capacity, or the ability to comprehend the circumstances of their existence, of someone who cannot speak. Does this erase their humanity? Shall we spay and neuter those in our care?
If the right to experience the pleasures and pains of adulthood is to be earned through an exhibit of mental capacity I deeply fear for the future of my species.
- Altaira, Portland, Oregon, USA
Will her body let menstuation happen when she is disabled? Tough decision all round but would be an unpleasant thing for her mother to cope with if she is the carer.
- Charlie, London
She clearly has a devoted mother and as such her mother would know and want what is best for her. The amount of care this girl requires from her mother and partner, I doubt that dealing with her menstruation as well would particularly add to their workload. I'm sure they have the best of motives.
- Roz, Chamonix, France
This sounds a very good idea, though what a difficult decision to have to make. It would protect the girl from the horrors not only of menstruation but also of pregnancy and motherhood, which she is clearly not capable of handling. It also thereby protects any potential child from the harm it could suffer by being born to someone unable to look after it. It will be an extremely difficult time for the family but I wish them all the best in getting this protection.
- Suzanne, London
Such a difficult decision for Katie's mum. I think that in this case the proposed op isn't about accommodating the Mother's needs - which are unlikely to change significantly as a result - but about trying to obtain the best possible quality of life for a young girl who is profoundly disabled.
- Gary Barnett, London
It's a tough call, as a parent you want to do the best for your child but if your child is unable to communicate their wishes then are you really doing what's best for them or is it simply what's most accommodating for you?
- Terry Roll, London
Well all that I can say is that, the disabled child won't really be able to give birth if it is grown up anyway. However, I don't really think that the parents should take such a risk, they should review all the consequences of their actions before taking such a step. If her womb has to be removed then let it be. Is there really a good reason for removing it?
- Hibba, UK
