ASHLEY – THE PILLOW CHILD

 

IVE BEEN 4’8" FOR ALL OF MY ADULT LIFE – AND NOW WEIGH@ 160LBS.

BEING SMALL WILL NOT STUNT HER INTELLECTUAL BEING…..

BEING TOO BIG FOR HER PARENTS TO CARE FOR HER AND BEING PLACED IN A

NURSING HOME AT 10 YEARS OLD DEFINATELY WILL.

MY VOTE IS IN FAVOR OF THE PARENTS WHO LOVE THEIR CHILD SO MUCH.

 

 

 

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Supporting Opinions

Supporting Opinions from the MSNBC Message Board

“Should parents have the right to stunt growth of disabled kids so they can keep caring for them at home?”, Message Board on MSNB.com with 138 messages – 110 authors – as of 12/05/06 03:24 PM.

“My son, who requires total care is 20 years old and weighs under 60 lbs.  In his case that is a natural state, but I regularly think we are lucky that he is so easy to lift, and how even another 20 lbs would complicate life.”

“This article brings to mind something I haven’t thought of in years: I work at a hospital in Los Angeles. In 1980, we admitted a 24-year-old woman with the mentality of an infant, who resided in a nursing home. Her diagnosis? 16-week pregnancy. An abortion was performed – she went through labor pains because 26 years ago anesthetic wasn’t nearly as safe at is now. No one knew who raped her, no one noticed for 4-months that her periods had stopped, and because no one cared about her, the only thing that happened was a perfunctory police report.”

“… Perhaps, if this debate had been started earlier, she would have had the opportunity to be cared for at home, and this would have been a family that would have still been together.”

”I look at a situation like this, and must say that stunting her growth was a life saving measure.  It is extremely difficult and expensive to find decent care products or services for adults, yet they are readily available for children for starts.  …  I feel that if she were allowed to grow to the size of an adult, her options for any care would be severely limited and finding any willing caregivers would be a daunting, if not impossible task.  Finding a baby sitter for someone who weighs 40 pounds is one thing, but it takes a real specialist for someone who weighs in excess of 120, and a highly paid one at that.

…  Her lower weight and smaller stature will not only make her easier to physically care for, she will also be more desirable for a caregiver to work with.  The choice the parents made only makes sense.”

“50+ yrs ago, my sister was forceps born with her brain damaged and with a mind stopped at an older infant stage child. She grew to a woman far bigger, stronger and heavier than most of the rest of us. And into monthly periods that terrified her. I wonder if this technique might have helped our family? Back then you locked such people away in attics or "homes" because only the more affluent could get outside help. Sister was kept with us and we all loved her during the decades until her untimely death. Would it have been so terrible to lighten all our burden, including hers? I just don’t know.”

“God Bless you, Advocatemom.  You are a saint and I know your pain.  Prayers your way and to that family who chose to take whatever medical science offers to help them handle this INCREDIBLY difficult situation.  Convenience, people?????  That would be just signing your child over to the government to care for.  KUDOS to the family who chooses to care for the child themselves no matter the hard choices that have to be made.  Better than an institution!!!!!!!!!!!!!!!!!!!  Where female patients have been known to be abused and impregnated by the staff.  THATS why they chose the surgery. NOT convenience.”

“Having an 18 year old mentally handicapped daughter who weighs 220 lbs is no picnic.  Getting her in the bath and out again is hard work and some skillful wrestling moves.  She is able to walk unsteadily, so thankfully I have that, but please don’t judge until you’ve tried wrestling a 220 lb scared child out of the tub by yourself after she has fallen and hoping the soothing words: ‘It’s ok, mommy’s here, everything is going to be fine’ outlasts your back.  The black and white / right vs. wrong / ethical vs. unethical line seems so clear for you, but come play at my house for a week ….”

“It is so easy to judge when one doesn’t live the daily torture of watching your own child suffering in many ways and not being able to comfort him because he is too heavy to lift into your lap.  I have a herniated disk and a partially dislocated shoulder from comforting my son (who doesn’t walk or talk and requires around the clock care) during his very difficult struggles everyday – both emotional and physical.  His muscle tone is so affected that he can’t even pass gas.  However, his spirit and perseverance gives him joy when others would throw in the towel.  The LEAST I can do is provide him the most physical and emotional comfort I possibly can.  If that means attenuating his growth, then so be it.  People need to realize that PEOPLE are made up of more than their bodies!  And by the way, my son does have a communication device and I would guess that he would tell me to do what these parents did, if we had a choice, so that he could be held.”

“At first I thought "No way!", but then after I read the article and read the posts, I have changed my opinion.  The child will NEVER be a teen or adult.  The child will always be a baby.  The odds of a miracle are close to nil from what I understand, and even if by some miracle she "advances" to the mental capacity of a six year old, then that would be truly a blessed event, because then she would be normal, right?  Six year old mind, six year old body.  Looking at it from that perspective, I think it would be more wrong to have an infant trapped in a grown woman’s body than an infant trapped in a 6 year olds body.”

“how fortunate that doctors are looking to find alternatives to convalescent/institutional care for disabled children. parents that are willing to care for their children should be applauded and helped to do so. any one who has taken care of a person with a disability will understand the physical demands even of a 6 year old. how many people can’t even carry their 3 year old? let alone lift them into and out of the bath tub? how many times does the average person go to the toilet, now carry a 75 pound person that many times. “

“As to the issue of the hysterectomy, this child could never be a real parent, and she should not be put through the frightening experiences of menstration and possible pregnancy. It is far more humane to keep her the way she is.”

“Until you have experienced having a 200 lb. body with a 18 month old mind loose in the house, don’t pass judgment here. I’ve visited a family in this situation and it was totally untenable, chaotic. Like having a wild animal on the loose. This was many years ago in another state and I’ve no idea what the final outcome was but the price this family paid, the siblings, parents and relatives was incredible. If one of you who are judging them harshly would like to volunteer to take care of someone like that for a few hours, do so and then come back and make your point. If you survive, that is. Or adopt a large wild animal for a while, keep it in your house and see how that goes over with your family and friends. The parents of this child have my utmost sympathy and what they did took a lot of courage, because most of society will smugly berate them and  then retreat back to their ‘normal’ lives, while those parents will have long ago forgotten what normal means. 

My father-in-law worked for 25 years in a state hospital where grown up ‘children’ like this lived out the remainder of their lives in diapers and were restrained by bars not unlike those in a zoo. The staff was stretched thin due to budgetary constraints, (their patients don’t vote) and by the difficulty of finding anyone who could or would do this sort of work, and could do little more than provide basic necessities while keeping their charges from hurting themselves or others. Any family that has the courage to take this on for themselves is to be congratulated and supported in any way possible.  The last thing they need or deserve is to be berated by the clueless masses.”

“I worked with the severely disabled  for  30 years and know the problem of a 190 lb. six foot tall man with the mind of an 8 month old. To bath , change, and just move him and others full size adults was a nightmare for them and the staff. If they could be kept small then life for them would be easier and happier, the would be taken out more and kept  home longer and live much more normal lives.”

“What a sad situation for any parent or severely disabled person trapped in a body that will never know independence to be in.  I congratulate the parents on doing what they can to care for their child themselves and can well understand how difficult it would be to handle an adult body with the mental dependence of an infant.  I have a cousin with a severely disabled son.  The mother caught measles from her nephew early in her pregnancy and knew that the baby would be severely handicapped but elected not to abort.  The child was not expected to survive and indeed was brought back many times when it would have been more compasionate to let him go but as the mother is very religious and anti-abortion, caring for the child overrode all other aspects of normal life for this family.  He is now in his early twenties, a man physically weighing about 180 pounds.  He is mentally an infant and can not speak, see, hear, control his limbs, walk, can not communicate or care for himself in any way.  He will never improve and will never have any sort of quality of life.  It is very difficult to attend to the needs of someone in that situation.  Sadly, his older sister, born healthy and normal, suffered in her family life as so much attention was required by the handicapped child.  And when her parents are unable to care for him, she will be expected to assume that responsibility, perhaps at the risk of having her own family and children.  I don’t see how anyone is the winner in this sort of situation.  Give the parents credit for wanting to care for their daughter as their own responsibility rather than put her in an institution where she could be neglected or abused.  If keeping her from going through puberty spares her that pain and results in her ultimate better health and safer, more loving care from her parents, then they did the best thing for her.  Why have her suffer through menstration and raging hormones? “

“Parents absolutely have the right to do this and SHOULD do so in the best interests of care for the girl.  Everyday logistics of how to care for an invalid like this need to be addressed.  If the parents can’t afford other care for the girl and must care for her themselves and are also unable to lift and carry the large girl, then her basic needs (bathing) would be impaired by allowing her to grow large.  If the girl is kept smaller vs. larger what really are the harmful effects to the girl?  She’ll never know the difference and never need the larger size, so why not relieve a huge burden on the parents.  Don’t be quick to say "NO" unless you have been in that situation . . . “

“Although it seems odd. Being a parent I understand what they are feeling. If I had a disabled child I would have a much harder time carrying for a 20 30 something infant then a cute sweet 6 year old infant. Pushing a 6 year odl around in a stroller is much easier then pushign over a 100lb infant. I have read numerous horror stories about hospice nursing home care and pregancies etc..I think my patience would be greater with a child vs an adult too it is hard to be angry with a 6 year old who is disabled vs an adult who is disabled. I think I agree with what they did and would probably have done the same.”

“As a pediatrician, I can tell you that none of the families that I know would have taken this decision lightly. I have several mentally and developmentally delayed children in my practice who have become too large for their families to handle. We are not talking about some one whose mind is as sharp as Steven Hawking. We are talking about some one who is unable to communicate beyond a smile of recognition. That is the mental capacity of a 6 week old infant. These girls "play" with their menstrual flow. They get large enogh that no one can pick them up to bathe them or to change their diapers. Some of these children can become very combative. I have one patient who’s mother can not handle him any longer because as a sixteen year old, he is bigger and stronger than his mother and has pinned her down and choked her.

It’s very difficult for someone who has never been in that situation or observed it first hand to recognize all the trials that these parents go through. Arresting this child’s growth will allow them to keep her in a loving home environment for a long time.”

“I believe in this situation the parents were acting on the best interest of their daughter. I’ve worked in facilities where there are young girls in her situation. You do worry about sexual abuse, particularly when they become physically mature. I applaud the parents for wanting to keep her at home”

“I believe this was a decision the parents reached after much soul-searching about what was best for their beloved daughter.  It would definitely help them take care of her, especially when they are older.  I helped my mom take care of my dad as he was dying of brain cancer.  We don’t like to think about the basic bodily needs of people who need total care, but the size and weight of the person is a real issue.  It was difficult for us to take care of my dad, and I am still young.  He was able to stay home until the end because there was someone strong enough to take care of him.  If my mom had been alone, he would have died in a nursing home.  Some decisions families make about the care of dependent people seem callous if you have never lived in their shoes.  It might seem that it’s done for convenience, but there is more to it.  It’s about what’s best in the long run, for both the patients and the caregivers who dedicate their lives to them.”

“Yes…Yes…they should.  If the medical  prognosis is that she will have to be handled he rest of her life, then it is necessary to make that easier.  It is not like killing her, only altering her physical body for those who have to care for her.  I see absolutely no downside to this.  I know of several who have to attend to their son or daughter one of which is actually 25 years old, but has the mind of a 5 year old  He cannot walk or speak, but can only crawl.  They have to lift him  frequently and I m sure it hard on the parents especially because of their age and health.”

“I work with families with children that are neurologically devastated. When infants/children are diagnosed and the outcome is final and irreversible, most families will want/attempt to care for their own child. This is manageable when the child can be picked up, moved, and bathed solely by the caregiver. As children grow into teenagers/young adults we tend to see families who are saying we love our child but cannot handle the care on our own any longer. Not only is it physically unmanageable for one person but the cost of hiring assistance most people cannot afford. Yes there is assistance though state and federal programs but I have rarely heard of getting more than 40 hours a week of help. Unfortunately as you know there are 168 hours in a week leaving 120 hours unaccounted for. I am in support of parents making this decision in collaboration with the medical team and ethics committee they are working with.”

“Her "stressed out parents" can handle her…just as she is today!! I think its easy for someone like you to make such a flippant remark about this situation, because you have never been on the recieving end.  I have worked with disabled children for seven years.  I find that the thought put into this dicision was well done, and proactive.  Ultimately, it is them who this falls onto anyway.  Look at the foster system and tell me what you see. 

Here in ohio there is a VERY HIGH percentage of disabled children in the foster system.  People throw these children away.  These parents have chosen the hard road, and I commend them!”

“We are shocked and sadded at the elietist comments and ignorance.  Some go beyond comprehension.  To allow this the child the opportunity to remain in the care of loving parents is a blessing.  We know from experience, help is nearly a myth – unless you have unlimited resources.  It is unrealistic and an imposition to think family and volunteers will continue to help over the life time of a child.  Even the best wear out.  Worse yet, the caregivers wear out.  Caregivers AGE as the child GROWS. It is very different to lift, bathe and diaper a 30 pound child in comparison to the 185 pound man he will become.  This is a decision only a parent faced with a lifetime of heartache can make. “

“People, should we be judging? To those who say they are tampering with God’s work..than why would God GIVE US the skills, knowledge and ability to alter and better treat those in need. Yes there is also abuse, in all things we do but in this?  How can anyone say this is truly wrong?  The child will never reach a mentality past infancy (short of a miracle). Now the child is happy, healthy, loved and shows love. Why rock that boat and put the family and child through pain, frustration and anxiety?  This child wont understand why one day they are unable to be held in a lap or carried. Why make daily events hard and miserable for all of them? Would you just up and stop carrying your infant or holding them in your lap. Remember this child IS an infant and has all the same NEEDS of an infant. It is probably the kindest thing anyone can do to allow this child to maintain the quality of life and happiness they now feel. I applaud the family for stepping up and doing this. Their child/baby will forever be cared for with better ease, less frustration and with those who truly adore them. This limits the risk of the abuse that comes with outside caregivers, who lose patience with adult infants. A far more serious situation than a couple who stunt their child’s growth in order to maintain their ability to care for them most efficiently.”

“We currently give growth augementing drugs to children who are ‘too short’, why would it be unethical to stunt growth too?  Lifestyle drugs and ‘medicalizing’ processes that are natural is currently accepted by society.  We give hormones to women experiencing menopause, drugs to treat impotency and infertility, and there are even new studies supporting drugs to enhance sexual performance.  Hyperactivity and attention deficit are not new entities, but modern lifestyle changes serves to increase the number of new cases.  Children are given drugs for this on a regular basis.”

“I asked my sister in law about this issue and she said "**** straight! If I could have kept my daughter small I would have. I’d be able to take care of her if she were little. Now I am helpless." She also went onto say she’d never knew such a treatment existed.”

“To all of you throwing out scathing remarks at the parents, I dare you to try and raise a developmentally handicapped daughter.  My sister did not have this option when she was born, and now she has a 26 year old body, including breasts, adult body hair, and a menstrual cycle, but has the brain of a 4th grader.  It took years before she learned how to use feminine hygiene products properly, prompting hurtful ridicule from ignorant and cruel teenagers at her school (we grew up in a small town with no special needs schools, so she attended public school), and even today she is completely uncomfortable with her body and can’t take care of it properly.

Quite frankly, I admire the parents for their obvious research into the matter, and making the decision that would allow their daughter to be a happy and healthy child, which she will always mentally be.”

“I know that it is fairly standard procedure to induce puberty or menstruation with hormone therapy if a girl doesn’t develop naturally. Periods are regulated with hormone therapy. It’s not even too big of a reach for children to be given growth hormones if parents (and doctors) feel the child is not growing as tall as he could. All of these things are done for the long term health of the child.  Why should this child be deprived of this type of care, specialized to her specific needs.”

“I only wish this option would have been offered up for me.  I am tired, my body is breaking down rapidly, and emotionally drained.  While my older daughter is now in a wonderful host home, the options for my younger daughter are not as good.  The local CCB in my state knew I could no longer take care of both of them so they put the oldest at the top of an estimated 14 year waiting list for adult services.  Someone had to die to allow her entry into the system.

My girls function at a 3-5 year old and 9-12 month old level.  Periods are a nightmare.  My older daughter cries and cries and tells us she is dying.  The blood terrifies her.  My younger daughter does not understand the blood, but we put her in an adult diaper and when she is one of those, she loses all of her previous toilet training.  Depo Provera shots do help, but there is still break through bleeding once in awhile.

Then there is the size problem.  I am a small woman.  My daughers are both small statured, but one outweighs me by more than 50 pounds.  I can get some limited cooperation from the older one, the younger one has to be completely taken care of in every way, feeding, toileting, bathing, you get the picture.  I have lifted these children out of the bathtub on Flexeril and Tylenol 3 more than one time because I had strained my back doing it the time before.  They are both going blind and when they fall, which we have done everything we can to prevent, picking them up is very hard.  This is just the tip of the iceberg of the challenges of keeping these kids healthy, happy and safe. 

Others have talked about how hard it is to find care for these kids.  As young children it is difficult.  As adults, it is next to impossible.  I can’t work outside the home.  There is no one to care for them unless I want to pay $25.00/hour for ONE child.  That amount of money for one child is not affordable to go out for dinner, let alone work outside the home. 

When I can no longer care for my younger daughter I will have difficult choices to make.  She has been on a waiting list since she was 14 for supportive services and adult services.  Am I going to have to put her into a nursing home as opposed to a group or host home (where she would be better off) because time ran out and I have no options left?  This option has recently come to the forefront for myself and my family since I was diagnosed with a potentially fatal illness.

If I had the option that those parents had, these issues might not be so large for me, for my girls (my oldest might still be here), or for my other children. 

The one life lesson that I have learned from my experiences with my girls is never to judge.  It might not be right for you or your family, but don’t judge, because you never know what you would do if you were confronted with such difficult decisions.  I swore I would not ever not take care of my children, then they grew up. 

The option should be there.  The choice to take it should be up to the parents, family members, or potential caregivers (adult siblings for example). “