Parents to sterilise disabled daughter

Jodi - posted on 03/08/2010 ( 21 moms have responded )




A Queensland couple have been given permission from the Family Court to give their disabled 11-year-old daughter a hysterectomy, sparking criticism from disability groups.

The Australian reports that the girl, known simply as Angela, suffers from Retts syndrome — a progressive neurological disorder that leaves her unable to communicate or move easily.

Her family had sought permission to have her sterilised in the belief that her periods triggered epileptic fits.

Other attempts to relieve the pain and discomfort caused by menstruation had been unsuccessful, prompting recommendations for the hysterectomy, which removes her womb.

Despite the support of three of Queensland's top gynaecologists, the approval for the hysterectomy has been slammed by disability advocacy groups.

People with Disabilities Australia's executive director Therese Sands said she was "alarmed" by the Family Court decision.

"It is our view that nobody has the right to sterilise a child, not a judge, not a parent, not unless it's a matter of life or death," she said.

While parents are normally allowed to determine medical treatment for their children, serious and irreversible procedures require court permission.


This conversation has been closed to further comments


View replies by

[deleted account]

Absolutely! I think some of them just launched in without taking in the nature of her problems and her future.

Isobel - posted on 03/12/2010




I totally agree that these parents did the right thing for their child. I'm sure that they did their research and did not take the decision lightly. I've been thinking about this topic since the pillow angel thread...I know it was the right thing to do in that case...but I DO see a dangerous slippery slope. I can understand why people who are advocates of the disabled would see the line getting blurred.

Esther - posted on 03/12/2010




I don't understand who anyone who supposedly advocates for the well being of disabled people could object to this. Obviously there shouldn't be blanket approval to just sterilize anyone with a disability, but that's why these parents needed a court order before they could do this. That seems protection enough to me.

[deleted account]

I think pain is a perfectly acceptable reason to have this procedure. I can understand why the parents want to prevent further discomfort to their child.

[deleted account]

Most people who have epilepsy (such as myself) can live a normal, uncomplicated life, as long as they take their medication. I would imagine that, coupled with Rett's syndrome, Angela's seizures are horrific. The incidence of SUDEP (Sudden unexpected death in epilepsy ) is small, but I'm guessing it would be more likely for Angela. Also, there's another worrying condition called Status Epilepticus, a condition in which the brain is in a constant state of persistent seizure, and that would be a huge issue, as it can cause death or brain damage.

Many women experience increased seizures around their period. I did.

In the original article, ther's a comment fro the obviously very feminist leader of the disability organisation: Carolyn Frohmader, chief executive of Women with a Disability Australia, told the Australian newspaper: 'It is only ever the disabled girls - when you go through the cases, there is never a boy, no matter how intellectually disabled, who has to be sterilised.'

As many were quick to point out, it's only girls who menstruate!

Yes, Angela's parents did the right thing, in my opinion.

(Sorry for raving on a bit but I know a fair bit about epilepsy. Many people think it's a relatively minor disorder, and for most of us it is, but it can be very serious indeed, especially when coupled with other disorders.)

Sharon - posted on 03/09/2010




Yes - an epileptic fit can kill. It can cause brain damage the more often they occur or the longer they last.

I think they did the right thing, all things considered.

La - posted on 03/09/2010




It sounds like the procedure is in the best interest of the child's health and comfort/pain levels. Having seizures can temporarily decrease oxygen flow to the can't tell me that her having a uterus that she arguably can't even carry or support a child with is more important than preventing seizures that can cause brain damage (if oxygen restriction occurs). Sounds like the advocacy groups are pushing their own agendas and don't care about the wellbeing of anyone in specific.

Ez - posted on 03/09/2010




I in no way support the mandatory sterilisation of people with disabilities, and I take Cathy's point about how the advocacy groups are looking out for the community as a whole, rather than the individual. So I can also support the parents' and court's decision to go ahead with the hysterectomy of this child. If my child was profoundly disabled and suffering for having her reproductive organs, I would not hesitate to pursue any possibly remedy.

Jaime - posted on 03/08/2010




It doesn't sound like the parents just woke up one day and thought "hey, let's take out her uterus for shits and giggles" I'm with the parents and the majority in support of the hysterectomy. If the parents are attempting to make the girl's life less painful and reduce or eliminate her epilepsy, then I would say their reason for the hysterectomy is valid...if they wanted the surgery simply to ease their worries of unwanted pregnancy that would be a completely different story. I think when it comes the "rights and freedoms" some people tend to jump right to the conclusion that these liberties are being trampled on (such as the disability director) without considering that there are likely medical facts that have not been made public, so no one except the doctors, parents and the judge can know for certain why the ruling was in the parent' favour.

Jodi - posted on 03/08/2010




Sharon, I agree. I think if they have gone to the extent of consulting 3 gynos on the issue, then it certainly hasn't been a decision they took lightly.

I think Cathy is right, and that the disability groups are using this as an issue to promote their own causes, without giving due consideration to the individual situation involved.

[deleted account]

I support the parent's right to do this, especially if they sought the advice of not 1, not 2, but 3 specialty gynos on the subject. They are the medical experts who would best be able to project long term effects on the girl's body. Now if I can only figure out a way to stop my dog's epilepsy.....

Jocelyn - posted on 03/08/2010




I support their decision. If it will make the girls life easier, stop her epilepsy, and protect her from an unwanted pregnancy (if she were to be raped for instance) then I see no reason not too.

[deleted account]

Mary, it breaks my heart to hear about those poor girls giving birth and not understanding. It makes me sad for their babies too.

Mary - posted on 03/08/2010




It actually used to be quite a normal thing for parents with mentally disabled or Down's Syndrome daughter to have them sterilized some time in their teens. I think it has fallen out of favor as a routine practice now, in part because of opposition from disability right's groups such as this one.

It's not a topic I know a ton about, but a friend of mine has a sister who is mentally disabled. Lisa has the mental capacity of about an 5 year-old. She is currently 54 years old. My friend says that her parents decided, after much discussion with her physicians, to perform a hysterectomy when she was about 18. It was a process that took considerable efftort on their part, and there was some type of court-madated conditions that needed to be met, but it was nowhere nearly as difficult to do then as it would be today.

My friend thinks it was probably the kindest act her parents could have done for her. She recalls when Lisa began getting her period...recounting every month, it would terrify her that something was horribly wrong...the blood, the cramping, the mood swings. She says it would send Lisa into a frightened panic, and she would be utterly dysfunctional until it had passed. They also worried about the possibilty of pregnancy. Lisa was in no other way disabled, and developed the normal sexual urges of a teenager, without the mental capacity to deal with them. In retrospect, my firend thinks it was the kindest thing they could have done for her. Her sister has lived in apartment with 2 other girls who are also mentally disabled. She has a job, and although their is fair amount of assistance and supervision, the girls are able to lead happy, productive, and somewhat independent lives (she still spends every weekend with my friend's parents, who are now in their 80's). Laurie shudders to think what would have happened if Lisa had ever become pregnant...she would not have coped well it at all, and then there would be the question of what the family would do with the baby. She also believes that if Lisa had continued to have a period every month, she most likely would not have been able to live as independently as she has.

I have seen 2 girls over the past year who were very mentally challenged, and pregnant. They broke my heart...they had no true understanding of what was happening to their body, although both seemed happy about a "baby' being there (think about how your 5 y/o reacts upon hearing that Aunt so-and-so is having a baby). Sadly , neither of these girls came from supportive homes...both were wards of the state. Their babies were placed in foster care immediately upon birth. The deliveries were horrible...they could not understand what was going on, why it hurt...but they were both so excited to see and hold the baby. I do not know what happened when they were discharged, and the baby did not go wtih them...makes me sad just to think about it.

[deleted account]

WOW! Interesting! I would never normally advocate to take away someone's rights but in this case I do tend to think the parents should have the right to make that decision. If Angela was able to make the decision it would be her choice but she's not and I'm sure her parents don't take the decision lightly; I'm sure they've given it much thought! If it's possibly a matter of life or death then absolutely the parents need to step up!

[deleted account]

Can you die or suffer great harm from epileptic fits? If so, the parents are within their rights. But couldn't she take hormones or something to eliminate her period?

Patricia - posted on 03/08/2010




If the procedure will benefit the child and prevent any further discomfort or medical issues, I feel it is the parents choice...they are doing it out of love.

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms