Parents stunt disabled 9 year old growth so they care for her.below

United States
January 4, 2007 10:15pm CST
Here is a story that has made a lot of people angry. CHICAGO (Jan. 4) - In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little "pillow angel" a manageable and more portable size Updated: 10:03 PM EST IM This E-mail This Surgery to Stunt Girl's Growth Sparks Debate By LINDSEY TANNER, AP CHICAGO (Jan. 4) - In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little "pillow angel" a manageable and more portable size. -------------------------------------------------------------------------------- Ashley's parents say keeping her small will reduce the risk of bedsores. Preventing her from going through puberty also means she won't experience the discomfort of periods, they say. Talk About It: Post Thoughts More Coverage: Ashley's Blog The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6. The case has captured attention nationwide and abroad via the Internet, with some decrying the parents' actions as perverse and akin to eugenics. Some ethicists question the parents' claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home. University of Pennsylvania ethicist Art Caplan said the case is troubling and reflects "slippery slope" thinking among parents who believe "the way to deal with my kid with permanent behavioral problems is to put them into permanent childhood."Right or wrong, the couple's decision highlights a dilemma thousands of parents face in struggling to care for severely disabled children as they grow up."This particular treatment, even if it's OK in this situation, and I think it probably is, is not a widespread solution and ignores the large social issues about caring for people with disabilities," Dr. Joel Frader, a medical ethicist at Chicago's Children's Memorial Hospital, said Thursday. "As a society, we do a pretty rotten job of helping caregivers provide what's necessary for these patients."The case involves a girl identified only as Ashley on a blog her parents created after her doctors wrote about her treatment in October's Archives of Pediatrics & Adolescent Medicine. The journal did not disclose the parents' names or where they live; the couple do not identify themselves on their blog, either. Shortly after birth, Ashley had feeding problems and showed severe developmental delays. Her doctors diagnosed static encephalopathy, which means severe brain damage. They do not know what caused it. Her condition has left her in an infant state, unable to sit up, roll over, hold a toy or walk or talk. Her parents say she will never get better. She is alert, startles easily, and smiles, but does not maintain eye contact, according to her parents, who call the brown-haired little girl their "pillow angel."She goes to school for disabled children, but her parents care for her at home and say they have been unable to find suitable outside help. An editorial in the medical journal called "the Ashley treatment" ill-advised and questioned whether it will even work. But her parents say it has succeeded so far. She had surgery in July 2004 and recently completed the hormone treatment. She weighs about 65 pounds, and is about 13 inches shorter and 50 pounds lighter than she would be as an adult, according to her parents' blog."Ashley's smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc.," her parents wrote. Also, Ashley's parents say keeping her small will reduce the risk of bedsores and other conditions that can afflict bedridden patients. In addition, they say preventing her from going through puberty means she won't experience the discomfort of periods or grow breasts that might develop breast cancer, which runs in the family."Even though caring for Ashley involves hard and continual work, she is a blessing and not a burden," her parents say. Still, they write, "Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers."Caplan questioned how preventing normal growth could benefit the patient. Treatment that is not for a patient's direct benefit "only seems wrong to me," the ethicist said. Dr. Douglas Diekema, an ethicist at Children's Hospital and Regional Medical Center in Seattle, where Ashley was treated, said he met with the parents and became convinced they were motivated by love and the girl's best interests. Diekema said he was mainly concerned with making sure the little girl would actually benefit and not suffer any harm from the treatment. She did not, and is doing well, he said."The more her parents can be touching her and caring for her ... and involving her in family activities, the better for her," he said. "The parents' argument was, `If she's smaller and lighter, we will be able to do that for a longer period of time."Ok I can understand why they did this and I'm not mad at them,and I don't have a disabled child but I have seen my friend take care of her Grandma and its hard, I agree. What do you think?
7 people like this
26 responses
@Thoroughrob (11748)
• United States
5 Jan 07
It is an argumental position. I can totally understand both sides. But as a parent of a disabled child, I totally understand their position. Do you let her get bigger and have to let her go into a home because you can't handle her anymore? It is not like she is going to ever be normal and have a family. As for the hysterectomy, I totally understand that also. Why make her have the monthly mess, that you will have to take care of and that will make her more uncomfortable. What happens if sometime in your life you run into a jerk and he takes advantage of the child, would you want to take care of her pregnant or think about aborting a grandchild. I am glad I have a boy. So before you make nasty comments, think about if your child was in this shape, what would you do. Sometimes it is is things that are abnormal for other people and they are quick to judge. But if you aren't in their shoes, don't be quick to judge. You do not know what you would do in the same situation. The decisions we make with these kids are not like ones others make. We don't know if it is right or wrong, we just do what we think is best at the time.
4 people like this
• Ireland
5 Jan 07
I wish more people had read this post. I really feel for Ashley's parents having to read the awful things that people have said about them.
2 people like this
@claudia413 (4283)
• United States
6 Jan 07
Excellent discussion. My niece has muscular dystrophy and so does her 11 yr old son. It's now getting to the point where she's almost not able to take care of him. He's almost her size. He is also mentally challenged and has autism, but he is the sweetest child I've ever met...very loving. She gets very little help from any agencies, but luckily has found a great man with 2 sons of his own. and they are really giving her the first help she's ever had. The niece's husband walked out when their son was diagnosed, his family turned their back on her and her son (my God, that's their grandson), and she's really had a hard road to travel. Her muscles will eventually give out on her (and the heart is a muscle also), and I only hope this wonderful man and his two sons continue to be in my nephew's life. They do not live in the same state as I do, or I'd be able to help out some. What these parents did is what they felt to be the right thing. I have no doubt they love their daughter, and I thank God I've never been put in the position they have. My heart goes out to the whole family.
2 people like this
@onesiobhan (1329)
• Canada
6 Jan 07
I think it's really easy for people to be outraged about this kind of thing when it's not them having to deal with caring for the child. The real crime isn't the parents who had to stunt her growth in order to continue being able to care for her. The real crime is that people don't get the support and assistance that they need in caring for disabled family members. People have to do it by themselves, and of course that means they have to make choices about what's going to happen as they get older and she gets bigger and heavier.
2 people like this
@Shaun72 (15965)
• Palatka, Florida
5 Jan 07
i see where it is a good idea in some way but is other ways i don't. I mean is her brain going to devolpand what if she asks questions later and also if her parents get old she won't age? it just sounds odd to me is all.
1 person likes this
• Ireland
5 Jan 07
As far as I can gather her brain hasn't developed past the stage of a 3 month old baby. I'm open to correction her though.
• United States
6 Jan 07
You are right, bitty...her brain will always be like a 3 month old baby.
@raeleighb (384)
• United States
5 Jan 07
That is horrible and wrong in so many ways. What would a parent do that to their child? Its just more convenient for them, so they dont have to deal with her as much as they would if she were allowed to grow and develope. Those parents are sick
@Thoroughrob (11748)
• United States
5 Jan 07
They would do hat so that they can still carry her, so they can take care of her. They already have to deal with her 24 hours a day. They will not be able to be done, like many of you are, when the child is 18. You also do not have to carry your 10 yr old or teenager around as a daily living arrangement. I do, I have to care for my 12 yr. old boy, 130 lb. and lift on him all the time. I still feel they did what they thought would keep them together. I don't know how long I will be able to care for my son. He still wants to be able to sit on my lap and be rocked to sleep. He is as big as I am. I totally understand and I don't think they are sick.
1 person likes this
• Ireland
5 Jan 07
Have you EVER had to look after a disabled child? All they've done is to stunt her growth in order to make her more comfortable. Believe me, they haven't reduced their workload at all. Any convenience here is minimal for the parents. They have one hard life ahead of them. This child can't move, she can't hold her own head. How much work do you think this couple have to do for that child? Just try to imagine it before you criticise them for doing what they've done. Because I think any parents that show the devotion that they've shown are absolute saints.
1 person likes this
@3Dlace (339)
• United States
6 Jan 07
I think what they did was great on their part. These mentally disabled people don't and will never understand the "adult" world out here. They will always be a child in thier mind. To take her reproductive organs out was smart because the mess someone (a caregiver) would have to clean up is very disturbing, aspecially when the disabled person is bedridden. I know of an adult who is mentally disabled. I watched him grow into an adult, helped his parents out and I know how hard it is to care for these people. This adult is two years of age in the mind and on the outside he is 27 years of age. He also has been moved from caregiver to caregiver because he is hard to handle. I think that most disabled people should get this done before they even reach age nine. Good call on the "pillow angel" parents!
• United States
6 Jan 07
I do not think that what they did is right, and it does bother me, but at the same time I have to think that maybe if they allowed her to keep growing as a normal child they may not be able to provide adequate care for her, but on the other hand I keep thinking back to my exsister in law, she has a mentally and physically disabled daughter, who was 16 the last time that I saw her (about 3 years ago) and she was smaller than any normal 16 year olds, and her parents managed to care for her just fine. She was still able to be involved in some family activities. This girl sounds very similar to her as she could not attain eye contact, was stuck in a bed or special wheel chair all the time. she could not do anything but smile on occasion, and her doctors said it was only muscle spasms. So I can not help but feel that these parents put this poor girl through unnecesary pain and surgery. I think that it is morally wrong.
1 person likes this
@DeenaD (2688)
• United States
6 Jan 07
I saw this same story on the Nancy Grace show the other night. I find it very disturbing that the parents would do this.
• United States
6 Jan 07
To each their own is what I say. Personally if it was my child, I would not have done that. I guess they felt that was the best thing for her.
1 person likes this
@dawn5679 (266)
• United States
5 Jan 07
I don't see that they did anything wrong. I feel that if she is going to have to be cared for forever then why not? She will never be normal and stopping her period would probably help her parents. How many of you know any man that would change a womans pad or tampon for her? Thats just my opinion.
1 person likes this
• United States
5 Jan 07
ya know when I first read this i was blistering mad!! lol..I though omg! how could a parent do that to there child? And i still dont know if i totally agree with it all the way..but after thinking about it,i understand what they did and why they did it..but me personally i would never do that to my child..but they did it out of love,and i can deal with that..but i wouldnt myself..great thread btw!!
@wmaharper (2316)
• United States
5 Jan 07
I'm sure many people are judging this family unfairly right now. I cannot imagine having a disabled child and hope I never have to feel that Pain. I think they made a descicion that is very difficult to make, and it was thiers to make. If they feel it's what's best for her and them, i'm sure they made the right one. May God bless them and comfort them.
1 person likes this
@pendragon (3351)
• United States
5 Jan 07
You work harder or find someone who can, you don't professionally mutilate the person in question.Civil barbarism.
• Canada
5 Jan 07
I think what they did was sick!! They have gone against God and Nature. I'm not a religious fanatic, I'm just simply saying that as humans it's not up to us to modify another human being. Let nature take it's course!! I understand surgery to save a life, but it's not like she was going to die if they didn't do this...
• Ireland
5 Jan 07
No, it's not like she was going to die. But she would have led a very uncomfortable life if they hadn't made this decision. What they've done will make her more comfortable.
• United States
5 Jan 07
I myself understand what these parents did. My sister cares for our brother at home and it is extremely hard on her. He is a full grown adult 36 year old man. If stunting her growth will enable them to continue giving proper care in the home then that would be so much better than having her getting bed sores, etc..
• United States
5 Jan 07
Yes I agree, at least they did not kil her as most parents do children who are not disabled. Thank you
@Lydia1901 (16353)
• United States
8 Jan 07
That's just a mean thing any parent could do to their child, how selfish of them and stupid too.
@sanell (2113)
• United States
5 Jan 07
wow, my good friend has a little boy with this same diagnosis, I am not sure she would be okay with stunting his growth but he will never be able to walk, talk, eat on own, he will always need to be cared for by someone. He was born and after not going through some developmental milestones he was diagnosed with that same brain damage, apparently what happened was as he was growing in the womb, the brain matter grew into itself like a ball rather than rooting out into the skull....so his brain is all inward and like a small ball of brain matter and it is not functioning properly. They thought that he would eventually die at a very young age, they even predicted that he would not live past 4 years of age...that his body would eventually give up or just stop him from breathing....getting sick with a cold is very life threatening for him and he has gone through a few trips to the hospital due to the common cold because his body stopped breathing. he is now about 10 years of age, and he is a big boy. He has an older sister who is now 13 years old and she is normal and healthy. I am not sure what the future holds but my friend sleeps in the same bed with him and takes care of him, her husband stays home with him, and she works full time, then she goes home and they do their routine with him. I am not sure what i would do in that situation, I think that if they had stunted his growth it could have been helpful but because he is so badly injured to his brain, the surgery could probably have killed him as his body would not recover as it normally could in everyday normal people. It is amazing that she was able to be put out and made it back okay from the surgeries she did have! They are a special family and I hope that they all know and continue to love and care for their daughter, sounds like they have already!
@djbtol (5496)
• United States
5 Jan 07
Desperate people do lots of desperate things. I really do not know the parents, their hearts or their intentions, so I'll just let it go at that. You would also need to be asking the questions of the medical community and anyone else advising that this was even a possibility.
@catsk123 (96)
• United States
5 Jan 07
I can understand their decision. Although they will have people all over the world condemning what they have done, I believe it is in the best interests of the family and Ashley herself. I have a friend with a very disabled CP child and as she is getting older it is harder for her family to care for her because of her size and weight. My freinds also are concerned about what kind of care she will recieve when they are too old to keep her in their home; one concern is that she may be molested by staff at a care facilty. It does happen with frequency! My heart goes out to Ashley's family.
@tanaclark (570)
• United States
5 Jan 07
It's their child and as long as they are not endangering the child I believe it is their right to choose. It seems to me that they are doing it so the little girl will not be in even more discomfort in her coming years. We all know life can be hard and decisions we have to make sometimes gets people in an uproar. Everyone is entitled to their own opinion. Thats what makes this country great. But we are not the ones who have to make decisions and care for this child. So I say even though it's probably not something I would do it is their right as her parents.
• India
5 Jan 07
atleast we know that her parents love her a lot...enough to want to care for her their entire lives. but i can't help but think about the future when she will outlive her parents. i'm sure disabilty homes will take care of that. but what if a cure is found in the future...will it be denied to her forever, because of the treatment given to her now.