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Filed under: In The News
A couple won permission from the Australian courts to go ahead with a planned hysterectomy for their 11-year-old daughter, whose medical condition causes her to have epileptic seizures when she menstruates. The ruling has sparked a nationwide debate there over the rights of children with disabilities.
The child, known only as Angela, has a condition called Rett Syndrome, according to ABC News Online. The disease is profoundly disabling and has left her without the ability to communicate; she is also unable to feed herself or walk without assistance.
While Angela's seizures are controlled by medication, they worsen when the girl has a heavy menstrual period, which, for her, began at the age of 9. Experts recommended to her parents in March 2009 that the girl undergo a hysterectomy, but the health provider would not perform the surgery without a court order because of the irreversible nature of the procedure.
The court ruled in favor of Angela's parents, outraging some who feel the girl's basic human rights are being violated. Leanne Dowse, from the University of New South Wales, tells ABC News Online that children like Angela need to be protected.
"Australia became a signatory to the UN convention on the rights of persons with disabilities in July 2008," Dowse says. "That convention says that individuals with a disability have a right to respect for his or her physical integrity. That sort of idea means that the first position is to protect an individual from these sorts of things."
But Mark Patterson, from the Australian National Council of Intellectual Disability, tells the Web site Angela's case is a nuanced one.
"Sometimes people get the idea that families just do this as a matter of convenience and it's all done within five minutes," he says. "It's not done like that at all. I think we need to think about the process and have some care and respect for the families and the judges involved."
Should parents have the right to seek irreversible surgical treatments for their children with disabilities?
Related: Rett Syndrome
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ReaderComments (Page 5 of 7)
3-10-2010 @ 5:06PM
karen said...i had a hysterectomy when i was 33 back in 1986. i have never had a problem and went thru menopause in my late 40's. easy peasy!
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3-10-2010 @ 5:12PM
DeAnn said...I agree a hysterectomy is the answer, but saving her ovaries may not be the answer. The hermones may be part of the problem. If there is a chance that she may one day have children, you do they freeze some of her eggs.
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3-10-2010 @ 5:18PM
Ronna said...As a mother of a child with Rett Syndrome, I too have to agree with these parents involved. My daughter had severe seizures in the past, but is nearly seizure free. If the seizures had gotten worse for her every time she had her period, I would have opted for the same procedure. And in many things I do for my daughter, I do decide for her. I make these decisions on a daily basis for her, and I would not be doing my job as her mother, caregiver if I didn't make these choices for her. Dealing with any disability is a difficult road to travel. But dealing wit Rett Syndrome is a monsterous ride. These girls didn't ask to be this way. These girls deserve to have loving, caring parents that can handle making these tough decisions for them. I can safely say that I too have to make double and even triple the choices for my daughter with Rett Syndrome, much more than for my other children. I am Blessed to no end to have my children, and be able to help them through tough choices. That is a mothers love, and a mothers right. Some may not like my parenting choices, and some may not like the decisions I make for my children, especially my daughter with Rett Syndrome. But, I do not take it lightly if my children are suffering in any way! So to those of you out there in this world, who do not know what it is like to have a child like our girls with Rett Syndrome, or even a child with seizures, or any kind of disability, please know that we as parents do love our children just as much as any parent, and that we appreciate it when others first do their "homework" on a subject, before making comments that sound rude, arrogant or ignorant to those of us who live with this sort of thing on a daily basis. Thank you.
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3-10-2010 @ 5:21PM
Denise said...I'm sure these parents did not rush into this decision. To those who criticize them I say "Walk a day in their shoes." Repeated seizures put this child at risk of aspiration leading to pneumonia. They can also cause a lack of oxygen to the brain. Hysterectomies are often done laparascopically and through the vagina, requiring much less cutting than they did years ago. The ovaries need not be removed, allowing the child to eventually go through normal menopause at the appropriate age. I can attest to the fact that hysterectomies are not the horror that some people on this site are claiming they are. At the age of 50, four years ago, I had one and was expecting the worst. It was one of the easiest procedures I'd ever had done. Four days following surgery I was able to slowly walk up and down stairs without any difficulty. I was totally off pain medications within the same amount of time. Am I a strong person when it comes to pain? No, I'm about the biggest cry baby when it comes to any kind of discomfort. Birth control methods that decrease menstruation carry with them their own risks. These parents only want what's best, and safest, for their child.
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3-10-2010 @ 5:22PM
moon said...Why is anybody worried about her going thru menopause, she doesn't know the difference anyway. She is only 11, she is just entering puberty, her hormones are not that of a full grown woman's. Menopause is not bad. It is just a psychological problem for most women. I am in the middle of it and the only discomfort is hot flashes at night. That is worth not having periods anymore. The girl will be more comfortable without the periods (and albeit the caregiver).
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3-10-2010 @ 5:22PM
old school nurse said...I used to be director of nursing at a facility for adults with severe mental/physical disabilities. We tried unsuccessfully to get a hysterectomy for one of our women (just uterus, not ovaries) because she had such heavy heavy periods plus her cerebral palsy was so bad it was very difficult to get her on a toilet and even begin to separate her very spastic legs to adequately clean her up and change pads when she had bleeding. Took two adults to accomplish it, which took both the teacher and the aide out of the classroom for 20 minutes every time. But the laws enacted by the rights groups don't allow the surgery because we would have made her incapable of reproducing........well let's see. She never did reproduce, she can barely talk, drools, needs help with feeding, dressing, etc. Her life would have been easier and more comfortable without those monthly heavy periods. And yes, she had seizures too, many people with cerebral palsy do.
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3-10-2010 @ 5:22PM
KALI said...there is no 'slipprey slope' a) she is a MINOR child an has NO rights other than what IS or IS NOT approved by a court of law. b) this is because under the law a MINOR child has no 'voice' (this is also a legal term) therefore the parents or their legal representive would act in 'ad litem' for the incapacited child.
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3-10-2010 @ 5:26PM
Michelle said...I agree but there is a less painful surgery that takes away her period and her ability to have children without having to endure so much pain and possible early "menopause" symptoms. I am not sure of the name of the surgery but what it does is it removes the lining of the uterus therefore it stops the ovulating that causes a person to have regular monthly periods. All in all the monthly cycle ends and the pain to the surgery is very minor in comparison to a hysterectomy. No scares they go through the belly button or thru the cervics depending on the surgen.
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3-10-2010 @ 7:09PM
undrgrndgirl said...michelle - it's sad to hear a woman so mis-understand how a woman's body works - but i guess it should come as no surprise given the abstinence only sex ed taught in this country. i don't fault you for not knowing the name of the procedure it is called endometrial ablation, which DOES remove the lining of the uterus - it is not always 100% successful; also, it does NOT stop ovulation as you claim, to stop ovulation you MUST induce menopause by removing the ovaries (the parts of a woman's body that produces eggs) that procedure is called an oophorectomy...(i'm a former ob/gyn nurse)...you really should know the parts of your own body and what they do...
3-10-2010 @ 6:00PM
Lisa said...I had a hysterectomy and even though recovery hurt, as with all surgerys... it was hardly "death" as takeachance42 put it. That comment was so ridiculous... what does that even mean? The girl was never going to have children, why make her suffer every month when there is no need! You still go through menopause, but not until later in life! Some women do not even have to take hormones. I don't! I feel 100% better since I had the surgery.... I would do the same for my daughter given the situation they are in!
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3-11-2010 @ 9:25PM
Bob said...Like she's ever going to procreate. Its going to help her immensy, but the people believe its thier right to have a ton of kids in an industrialized country.
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3-10-2010 @ 5:42PM
Tess said...Menstruation is bad enough on its own, let alone menstruation along with going into seizures.
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3-10-2010 @ 6:05PM
Amy Rosenberg said...I wish more people would find ways to help those young people who will never be able to care for children. We put people who are limited in intelligence, out in the world, without resources, to be used by unscruplious people. These people are unable to tell who will use them and harm them in the name of love. We saw this in the Pittsburgh area recently. A sweet young woman was abused by six people and eventually killed. Her loving parents had taught her to be kind, considerate, loving, clean, neat, and a good person. What the could not teach her is that attention from a man is not always love. At least these parents are protecting their child in the best way they know how. I wish more could be done to help all of the innocents. And some people are forever innocent.
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3-10-2010 @ 6:06PM
MomtoKate said...I am a mother of a Rett child who is 8. It is a horrible disorder that can leave girls trapped in thier bodies. My daughter can't walk, talk or use her hands. She eats by a g-tube and can't even sit on her own. She functions as a toddler age at best. She relies on others for all her care. Seizures are awful and they do cluster around her period. Will she ever have kids? No way. Would she rather have a procedure that will take away some of her suffering or keep having periods for no reason? Well, as her mother I'd take the non suffering anyday. Would the Drs. talk to us about hormone replacement and side effects and we weigh the pro vs. cons..of course. Menopause is nothing compared to what these girls live with seizures that leave them crying and screaming afterwards up to twenty times a day or more. Never, ever judge a mother for trying to limit thier childs suffering unless you walk in thier shoes. Many girls try the birth control to limit periods and they react badly and have more seizures. This is a last resort procedure. The courts have become absurd with political correctness in these cases.
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3-10-2010 @ 6:09PM
Parissa said...I don't believe parents should be given the 'right' to seek irreversible surgical treatments for their children just because the child has a disability. There needs to be a good reason for such a request, which, in this case, the parents had. This child suffered dreadfully due to her menstal cycle. It would have been cruel NOT to have sought and been given authorization to have the necessary surgery. I appreciate Mark Patterson's comment quoted in the above article: "Sometimes people get the idea that families just do this as a matter of convenience and it's all done within five minutes," he says. "It's not done like that at all. I think we need to think about the process and have some care and respect for the families and the judges involved." I couldn't agree more!
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3-10-2010 @ 6:11PM
Martin Winter said...If the medical professionals felt it nessary, what right does the court have to interfere.
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3-11-2010 @ 3:14PM
KatesMom said...Rett girls are born normal and regress. It is a severe form of Autism. It is in a gene that is not detected before birth. Why would you ask about that anyway? We Rett moms love our girls as they are happy and loving and bring us joy even though they have lots of challenges.
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3-10-2010 @ 6:37PM
Brenda said...I think it needed to be done! I think in this case the parents had a good reason to do this!
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3-10-2010 @ 6:31PM
XxRosexOfxSharyn said...I agree with the comment wondering if some organization has been keeping this decision from being decided for two years and has contributed to her current condition. I wonder if something had been done earlier if she would actually have gotten to live the rest of her life the way she should get to that she now never will. It’s a personal decision that she will never get to make for herself yeah, but if it will help in keeping her condition at bay (sort of) and not making her life more of a living hell than it probably is with that condition then it should be done.
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3-10-2010 @ 6:36PM
Nurse Cheryl said...Rett Syndrome is a form of autism that affects 100% females because males born with this syndrome die soon after birth. I work as a nurse in a group home in AZ and recently we lost a resident with Rett Syndrome. Watching this woman rock back and forth and wring her hands day in and day out while being unable to communicate, toilet, dress, feed herself or walk, talk, or even make eye contact was very sad to watch. Fortunately, her seizures were well controlled with medicine and she didn't have an increase in seizure activity during her menses. But if she did, I hope her mom would have considered this option also along with the many other options I'm sure were made available to this girl. This was a very hard decision for her parents to make, and an otherwise healthy woman who may have experienced a "bad" hysterectomy should open her eyes and look at the bigger picture here. Put yourself in their shoes and then decide. At least be more compassionate.
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