Pillow Talk-The Debate Over the Ashley Treatment

“About an hour into the movie, I am holding his hand and realize that his shorts are wet and he needs to be changed. I suddenly realize that while I brought his diapers, I would be unable to change him. The restroom, while it does have a handicapped stall, does not have a bench or any place to change Dear Son. While I could lie pads down on the washroom floor and change him there, I have the problem of not being able to dead lift his 140 pound body off the floor and back into the wheelchair. Therefore, I can not change him here and we must now leave the movie and go home. There isn’t another alternative. He won’t sit still with a wet diaper and I can’t expect him to sit another thirty minutes without being changed. We leave the movie. I am frustrated. What was supposed to be a fun time out had to be cut short because there weren’t adequate facilities to change him.

Life isn’t fair sometimes. I wonder how many times this same scenario repeats itself around the country. I wonder how many disabled kids don’t get to go to the movies because there aren’t facilities to change them. I wonder how many mothers take their other kids and leave the disabled child at home because there aren’t places to change them. I wonder why in the year of 2006, that we don’t have restrooms for everyone to use.”

This was an excerpt from a post I wrote earlier this year titled, "The Ant Bully” where I detailed how difficult it was to go to the movies because there wasn’t an adequate restroom to change Dear Son, a 5’9” 140 pound severely disabled teenager. What I didn’t know at the time, was that in Seattle, Washington, there was a radical new treatment that parents of a severely disabled daughter used that would have solved this issue. Instead of creating facilities to change severely disabled children, we could, well, keep them small buy giving them excessive hormones to reduce their physical and sexual maturity along with other surgeries to prevent the above situation. If this were done, then I could take Dear Son on more outings, he would have more fun and I could take him to any washroom to change him. And, here’s the best part, I wouldn’t have to put him in an institution and I could keep him at home. And no, this would not be to make my life easier, it would be to improve Dear Son’s quality of life. Problem solved!

This is ludicrous of course but is designed to illustrate just how ridiculous the logic is in the “Ashley Treatment”. (This story has been covered in multiple media outlets and you can read about it here.) As you know by now, this is the case of a couple who decided that if they could keep their daughter Ashley “small” that they could continue to delight in holding her in their arms, take her on more trips and she’ll have more exposure to social gatherings “in the family room, backyard, swing, walks, bathtub, etc.” Ashley is a nine year old girl that has static encephalopathy, a severe brain impairment and she can not walk, talk, keep her head up, roll over or sit up by herself. She is fed through a tube and they refer to her as their, “Pillow Angel” because she stays right on her pillow where they put her. (Dear Son’s abilities are identical to Ashley’s although his were caused by the ARX gene mutation.)

So they chose to give her a “growth attentuation” treatement, a radical treatment to keep her height at 4 feet 5 inches and her weight at 75 pounds. The treatment also included a hysterectomy, surgery to remove her breast buds and subsequent high doses of estrogen. They dub this treatment, “The Ashley Treatment”. Her parents think it’s a humane move and her father added, “People think it must have been a horribly difficult decision to have the treatment performed. It really wasn’t.”

According to the Chicago Tribune, the separate ethical issue is whether or not a severely disabled person’s life might be improved by having his or her growth impaired. The treatment was also discussed by Dr. Jeffrey Brosco, a pediatrician at the University of Miami, who was co-author with Dr. Chris Fuedtner, in an editorial criticizing the treatment in the October issue of the Archives of Pediatrics and Adolosecent Medicine. According to the Chicago Tribune, “Brosco and Feudtner wrote parents of severely disabled children could feel pressured to have their children undergo it, to avoid the future choice of whether to send the fully grown child to an institution”.

The parents have refused all media requests for interviews and chose instead to explain his position in their blog.

As the mother of a severely disabled teenage boy, I think they are totally missing the point. The parents go to great lengths to defend their choice for treatment arguing that it’s not to make their lives or the caregivers lives easier but rather, to allow their daughter to participate in more activities with the family and in social situations.

I think keeping their daughter small is a poor way of treating a bigger issue. The issue is not that we need to stunt the growth of all severely disabled children. Are their lives not hard enough? Have they not been through enough that to have “additonal” surgeries to remove any signs of maturation? I mean, what’s next, cutting off their legs and arms so they can roll over easier? Would that make it easier for Dear Son to swing, or to go to the bathroom at the movies?

The real issue is not whether we should begin to these treatments. The "Ashley Treatment" should start and end with Ashley. No severely disabled child should be subjected to that abuse.

I have trouble with the case for many reasons. As Dear Son’s mother, I consider myself his number one advocate. Because Dear Son can’t speak for himself or rather defend himself, I am very protective of him. Who is Ashely’s advocate? If it’s not her parents, who advocated for Ashley in this case?

I have great difficulty understanding how the medical profession could have argued either way that these treatment choices on the basis that her quality of life would be better if she were smaller. How did they go about discussing what items would in effect “quantify” a better life?

I can’t believe that stunting the physical and sexual maturation would be good for a person’s sense of self. Where was the child psychiatrist in this discussion?

What role did a school psychologist have in this discussion? Dear Son attends high school now and one of his favorite activities is when they take him in his wheelchair in the hallway and he gets to look at the high school girls. Dear Son is the same size as other high school boys and does the same things they do, look at pretty girls. But how would it be if he still looked like a little boy, sitting in the hallway? I can’t imagine how it will be for Ashley when she sits in junior high and high school and all of the other severely disabled kids in her classroom will be going through puberty and growing up. She will be the one that doesn’t grow and is small. How will she feel? One of the hallmarks of puberty is being like everyone else. Where will Ashley fit in when she’s an outcast with her peers? Is this really in Ashely’s best interest and Ashley’s best quality of life?

What happens at school? One of the goals of all special needs program is to help these children fit into society and to learn basic skills of daily living. Does keeping her small make her an outcast and assist people in treating her like a baby or a child? Is that in Ashley’s best interest?

And if the father was that interested in being able to lift his daughter, and giving her a better quality of life, why couldn’t he take up a weight lifting program? I am a single mother and I lift Dear Son who is 5’9” and weighs 150 pounds. If I recall, Ashley wasn’t expected to exceed 5’6” and 125 pounds. Wouldn’t that have been another alternative to the “Ashley Treatment”? I would think if he could lift her then she could go into the family room, on outings, get into the swing in the backyard, etc., all things that they felt would increase her quality of life providing they could lift her.

And finally, the real issues behind this case have nothing to do with Ashley herself. We do a lousy job as a society in taking care of these children and their parents/caregivers. The real issue is that it is a lot of work to care for children like her and children like Dear Son. We expect these families to care for these children twenty four hours a day without any help. We have inadequate Respite programs and a lack of qualified workers. We need to give parents a break. We have many health plans available and yet the trend is to eliminate private duty nursing.

We don’t have any daycare for disabled children; we have no after school programs for severely disabled children. We need to have daycare that is safe, reliable and good for our children; then as parents, we can work full time. We need to be able to save tax free for our own retirement and that of our severely disabled children. The rules can be simple. If you have a child that meets the requirements for SSI in terms of disabilities, you can save tax free in a 401(k) plan for your children. Hardship withdrawals would be allowed.

We don’t have public restrooms that allow you to change a teenage child or an adult who can not stand up. We don’t even have them at hospitals that treat these children and yet every facility has a care statement in the emergency room that says they treat their patients “with dignity”. We need to require that every medical facility and public place that gets federal funding have adequate rest rooms for every person, regardless of their physical ability so that they can be changed with dignity and they can have the quality of life that this surgery is designed to enhance.

We need to re-think our health plans. Many plans are limiting funds for durable medical equipment, limiting physical, occupational and speech therapy visits and eliminating private duty nursing. We need to expand our Home Based Services program along with our college savings plan and re-name them “continuing education plans”. This would allow us to save money for our special needs children to get additional physical, occupational and speech therapy they need to become semi-independent or independent adults, less reliant on government funding.

Finally, I understand more than anyone the challenges of caring for a severely disabled teenager but we need to meet our challenges head on, not stunt the growth of our children, to make them easier to care for under the guise it will give them a “higher” quality of life. That is just plain, barbaric. Until then, I’ll continue to buy my son his cargo pants, with the 34 inch inseam. I’ll continue to lift him into his wheelchair and bring him into the living room every day, so he can spend time with me and then lift him into his bed at night, gently placing his head on his pillow. And if Dear Son could talk, he’d tell you himself that the Ashley Treatment is just plain wrong. I’d call that, “pillow talk”.

P.S. *As a reminder, don’t forget to vote for me at the 2006 Medical Weblog Awards under “Best Patient Blog”. You can vote here. Just click on, “Dream Mom” and hit the “vote” button. Polls are open from January 3, 2007 through January 14th. Thank you.