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Court Grants Parents Permission to Sterilize 11-Year-Old
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










ReaderComments (Page 1 of 7)
3-10-2010 @ 2:14AM
mbjisajjfan said...To me it doesn't look like she would ever have children anyway because of her condition. If the procedure would help her in some way I don't feel that it's a bad decision...
Reply
3-10-2010 @ 11:37AM
partyof5 said...I agree. It is a sad situation for everyone involved. If it will somehow improve the quality of the girls life I think the parents are doing the right thing. She is clearly not able to make this decision for herself , and I am sure she wouldn't be having children do to her condition.
3-10-2010 @ 4:17PM
takeachance42 said...Apparently you have not undergone a Hysterectomy! This is not a fun procedure and does have reprocussions. She will undergo menopause which will be perpetual in other words never ending. There may be cramping for life involved. So sister you tell me what's better? I will also assume that mom hasn't gone through one yet either. Doctors should never suggest that kind of death. Yes it is a death for a women to go through a hysterectomy. Go online and lookup what real people who have gone through this have to say!
3-10-2010 @ 4:37PM
Debra said...I did have a hysterectomy about 10 years ago. If her ovaries are left intact she will continue to produce the hormones and won't suffer early menopause. I hope this procedure provides some relief for that dear girl. My prayers are with that family. Kudos to the judges for helping!
3-10-2010 @ 4:39PM
Donna said...Yes, I too have had a hysterectomy, It was painful, but it did not last. I can only imagine what all the seizures are doing to that poor girls brain, It does not look to me that big of a deal. she will get over the pain and will not always go through menopause. and with the right medications and support from her parents. she will breeze right through it. let the parents be her parents. I had mine at 38 and I am alive and kicking. I am a mother of two grown children that are healthy, I know I would do the same thing to help my child! lets stay out of others lives.
3-10-2010 @ 4:40PM
Andi said...takeachance...did you read about the seizures? You think she should go through life with those? A hysterectomy will most likely be a walk in the park compared to the resulting brain damage from the repeated seizures.
3-10-2010 @ 6:04PM
TAngel444 said...THERE IS A GREAT WEBSITE HER MOTHER CAN JOIN FOR FOREE AND VERY INFOMATIVE.
www.hystersisters.com
THIS IS A HARD CHOICE OF COURSE FOR THE FAMILY AND THE DAUGHTER. HAVING A HYSTERECTOMY NO MATTER WHAT AGE YOU ARE IS NO WALK IN THE PARK AS I WENT DOWN THAT ROAD. I FEEL FOR THEM. I SEND MY PRAYERS. I HOPE THE WEBSITE WILL HELP. REGARDS TAMMY....^j^
3-10-2010 @ 6:04PM
Aisley said...As the mother of a child with special needs, I find it simply ridiculous that the people who talk about "defending the rights" of people with disabilities are the ones that DO NOT HAVE a child with disabilities or even have the slightest idea of what the syndrome entails. A child with Rett Syndrome never make it to an age where it matters if they have their uterus or not. This surgery will allow the last days of this child to be the best they can.
3-11-2010 @ 12:56AM
JWEST said...This comment is to the article, not any particular response. Good God, the child is PROFOUNDLY Disabled, ANYTHING that would enable her to NOT suffer MORE.Her caregivers are already doing everything possible to care for her. If she cannot communicate, nor eat without assistance, how would she care for a child. Why do we require our overburdened legal system to make this decision. Her parents right or wrong are responsible for her. They have her Basic human rights (and theirs) at heart. She's being loved and cared for by family. Who will soon need MORE assistance for them, because they care for an individual who may never be more than she is now. Any one who personalizes this story in regard to your own surgery as an adult should reread the article about this child.
3-10-2010 @ 7:46PM
Ellie said...I know the grandparents of a 20-something with Rhett Syndrome. It is a devastating condition. I think outsiders need to mind their own business and let the family decide what's best for the child.
3-10-2010 @ 8:06PM
childpsych said...Actually Takeachance each woman has different side effects for a hysterectomy, some have very little at all. There are also side effects from seisures, like brain damage which could lead to actual death! Just because you had a bad experience doesn't mean she will or that her parents should be able to make the best decission for her. Nobody would be able to tell me what is best for my child!
3-10-2010 @ 8:22PM
MVA said...This child will probably not reach adulthood. Her quality of life is already profoundly compromised. Rett Syndrome is progressively disabling. She will never get better. She will never regain anything that she has already lost from the illness; she will only continue to deteriorate. If her parents feel that what little quality of life she has can be improved by alleviating the seizures then they have the right to do what they think is necessary. Those of you who talk about what a hysterectomy is like and what a "death" it is for woman are not considering the person here. She has died many deaths already. so have her parents. I've personally seen what Rett does. It is totally devastating. Have you ever seen bad seizures? They add to the disabilities by causing more brain damage. Get over yourselves. Leave these families to their decisions. You've never walked in their shoes. I'm sick of people telling others what choices they just make in such situations. Walk a mile in their shoes then (and only then) maybe you can have a suggestion or two. Even then it's all about personal struggle and the variations in how people deal with those struggles. Let it go.
3-10-2010 @ 9:57PM
Abby's Mom said...I am just going to jump right in here...I have undergone a hysterectomy due to horrible periods and very large and painful fibroids. AND my own daughter has Rett Syndrome, The very same condition Angela suffers from. My daughter..short of a miracle or cure will never conceive..Even if there was a cure or treatment available the basic genetic make up of every cell in her body would ensure that any children she did have would also have her condition.
My daughter can barely walk. She cannot speak, Shehas trouble swallowing,breathing,digesting..I could go on and on. She also will never be able to tell me that she is cramping or that she hurts. If I could when the time comes I would make the very same decision for her. I could keep her pain free while she heals from the surgery. The only reason we have a womb is to carry children yet we are cursed as women to have everything that comes with that. every month. There is so little I can do for her in every aspect of life..No matter how hard I try or how much I want it. If I could spare her any pain or discomfort I would jump at the chance.
I think it is very easy for people that dont walk in the shoes of families living with this disorder to scream about human rights. My daughter and girls like Angela have to fight every day for every little thing...My daughter was never given the chance of having any kind of life..Do they same people screaming demand goverment money for trials for the possible cure that was found for our girls in 2007??Do they know the pain of taking turns watching your child breath at night without being able to stop or prevent anything?
I understand the need to beat your drum and all that..Please dont ever say we would so this out of convienence for ourselves as parents. We already lift them,carry them,bathe and dress them and change their diapers no matter their age or weight. We are human Kleenex,bibs and vomit catchers. It would not be that much more trouble considering. We are thinking our OUR girls.
3-10-2010 @ 10:34PM
Megan said...I have to agree. They are giving her the best quality of life possible. Why should they make her have to go through these debilitating seizures just so that she could possibly have kids should she make it to that age and make that choice for herself. I don't know much about Rhetts and haven't had a hysterectomy, but I do know that repeated seizures are VERY damaging to the brain and can even cause damage to other parts of the body (if they fall and break a limb on the way down, in the car causing an accident, around other people, etc). Why do other people seem to think that they should have a say. These parents are thinking about making their daughter's life the best they can. Why does it matter to anyone else what they do? They know what's best and anyone else should just butt the hell out.
3-10-2010 @ 10:38PM
Megan said...By the way, takeachance42, not everyone reacts the same way to the same procedures. Get a grip and stick your nose back in your own business. Thank God the child in this story isn't yours.
3-11-2010 @ 4:43PM
Jan said...This girl is never going to have a boyfriend or husband, so she's never going to have children (unless God forbid, she is raped), so why does she need a uterus? And if she only has her uterus removed, which is what a hysterectomy is, she won't go through menopause.
After 30 years of horrendous periods from endometriosis I finally convinced my doctor to remove my uterus and ovaries, and it was the best decision I ever made. It was worth going through early menopause to not have to deal with the pain every month. I'm sure that her parents only want the best for her and I doubt that they have made this decision lightly.
3-13-2010 @ 1:50PM
debu_chan said...I just recently learned hysterectomy helps catamenial seizures. I was SO happy to learn this. Now I'm going to start bringing up this point with my doctors. At 32 I should be old enough to have them respect my choice, without demanding I have children first. (I see no reason to fear it either, since everyone in my family only have positive experiences with their hysterectomies. The only negative experiences came when they tried the HRT. The stopping of taking HRT made things right for them again, they just didn't have to deal with periods, or cysts anymore.)
3-10-2010 @ 2:16PM
Lisa said...Sometimes parents really do know what is best for their children. Walk a mile in their shoes and then say they are doing the wrong thing.
Reply
3-10-2010 @ 4:17PM
Chrissy said...You couldn't be more right!!!! I wish more people would understand this...
3-10-2010 @ 6:13PM
angelina said...I couldnt agree more... I am a grown woman and I have severe complications due to my menstral cycle since i was given medications to even start a cycle at 12, i wish after 8 surgeries i was given the option for a hysterectomy but the doctors wont do it not as a child, nor a grown up. I dont have seizures, but i think what the parents did is merciful not cruel, and if the child wants kids there are other ways to obtain a child.