Should a Severely Disabled Girl Be Allowed to Grow Up?by Kristyn Crow | More from this Blogger 18 Jan 2007 12:09 AM It's a question I would never have considered possible. But today I read an article that was both fascinating and troubling. PEOPLE magazine reported the heart-wrenching story of a nine-year-old girl with severe disabilities, and her parent's controversial decision to use hormones to halt her growth and physical maturation. (PEOPLE, "Girl, Interrupted," January 22, 2007, by Macon Morehouse.)
When the story was reported in a medical journal, harsh critics spoke out in protest. Many people, including some medical experts, felt these actions were "Frankenstein-esque." They argue that Ashley will be made into a freak who is forty years old and still the size of a child. But Ashley's parents explain that their decision comes out of love. They want to be able to carry, cradle, and hold their daughter, who will always be mentally like an infant. They say that what is really grotesque here is the idea that a full grown woman with the mentality of a six-month-old would have to endure menses and the awkwardness of her large body being transported from her bed to her wheelchair, while needing diapers, etc. They add that keeping her small would enable her to travel more easily and make caring for her, which will be their lifelong responsibility, a little less difficult. So tonight I have been contemplating this question, and I am truly torn. Is it unethical to surgically alter a disabled person, keeping her eternally a child, for her parents' convenience? Or, is this a humane decision that takes into consideration the well-being of this very special individual? It's a decision I thank God I don't have to make. I do wonder whether "Ashley Treatment," as it is now being called, will become a trend for families with severely disabled children. The Seattle Children's Hospital doctors decided to honor Ashley's parents' request. Ashley will now always be, both physically and mentally, a child. Her close-knit family has a blog where they defend their position passionately. You can visit the blog by clicking here. This issue is being discussed online all over the internet. Heather Long has written an excellent article on this topic in the "Baby" blog. I was unaware of her post but wanted to keep the issue available in Special Needs, since it seemed so applicable to parents of special needs children. Kristyn Crow is the author of this blog. Visit her website by clicking here. Some links on this blog may have been generated by outside sources are not necessarily endorsed by Kristyn Crow. Related Articles: "If Only We Had Known." Couples Sue Over Wrongful Life Adoptive Couple Kept Their Special Needs Children in Cages Brooke Ellison Runs for State Senate! Learn more about Kristyn Crow  Kristyn Crow is the mother of seven children, and the author of three children's books. Visit her website at www.kristyncrow.com. Relevantspecial needs tags User Comments  Julie Gentry (5915) 18 Jan 2007 01:06 AMWow. What a story. Hard to justify messing with the natural order of things, but I can certainly see the parents' point of view! Like you, I'm glad I don't have to make that choice.  Katie-Anne Gustafsson (604) 18 Jan 2007 02:33 AMI've read a fair bit of stuff about people who are very negative about what the parents have chose to do, and to be honest, it's not something I'm entirely comfortable with mysef - BUT - I'm not the person who has to take care of this child (and she is still a child at the moment), and nor are these people who are so outraged. The parents are probably doing the best thing that they know how in order to be able to care for their child as long as they can. There's no hope of the child getting any better, just bigger. So perhaps keeping her at a size where her parents can lift her without help isn't such a monsterous idea. And isn't it better to stop any monthly problems that would further add to the child's indignities as she gets a little older? Isn't this better for the child's continued quality of life - her physical needs as a full-grown adult would certainly seem to be more difficult. Like both you and Julie, I'm glad I don't have to make the choice, but if I had to, I'd hope that anyone with a negative opinion was offering to come and help change adult diapers and lift her in and out of the tub before they opened their mouth to judge me on my decisions. Compassion and understanding seem to be as lacking as real support for carers in our judgmental society. Katie-Anne  Valorie Delp (49340) 18 Jan 2007 06:41 AMI totally support this family and their decision. I like your point Katie-Anne, about those who would judge the family. . .are they coming to help? I don't think people realize how difficult it is to care for an adult sized body with disabilities that will leave her mentally as a 6mos. old. 6mos. olds need to be cuddled, cradled, loved, etc. and no doubt this person as a 40 year old will still need those things. Think about your 6mos. old babies having to go throught the discomfort of menses?! In my opinion, their choice, was the only compassionate thing to do to keep this child at home. It obviously is not an option for everyone who is disabled. It obviously is a radical resort. But in this situation, I truly feel like they did what was best for their family and daughter.  Kristyn Crow (2546) 18 Jan 2007 07:32 AMI have to wonder--is it easier to love a child with disabilities than it is an adult, and are these parents motivated by fear of the future? Those things concern me, yet I also have to admit that the more I think about this, the more sense it starts to make. If you know your child will always have the mentality of an infant, maybe keeping her in that physical state is the most humane thing you could do. Thanks so much for your comments! Valorie Delp (49340) 18 Jan 2007 10:29 AMI obviously can't speak for them but one reason I feel so strongly in support of them. . .is that I had friends whose son was faced with a similar future. As he grew, they were increasingly unable to care for him at home. To put it simply. . .he was just too big. I doubt that any type of growth stopping hormone was available for them at the time when it would've mattered. (In other words by the time there were other options, he was already too big.) But their honest desire was to care for him at home and not institutionalize him. Having him be 40, 50 even 80 pounds would've been managable but before he died he was a whopping 180 pounds. aileng (27) 10 Jul 2008 03:25 AMI don't know if this family is doing the right thing or not but I can understand their situation. I am a sole parent (mother) and caretaker of a 21 year old girl who is mentally and physically disabled. Despite her disabilities my daughterJasmin is now, how else to describe kindly her condition(?), mentally and physically disabled... sits in a wheelchair. She needs fulltime care, feeding, changing her clothes, wear diapers, toiletry, bathing etc. Nights I have to see to her to ensure that she does not suffocate or to avoid wounds becos she lie on one position only or if necessary change her diapers etc. Despite her mental disability, Jasmin understands more than she could speak. She could articulate about 10 words and where her well-being is concerned, she has a mind of her own, e.g. when she's hungry or when she needs her bedrest or when she wants her music. Since this year she goes two or three times a week to a Daycare centre for disabled young people and she gets twice a week physical therapy and although the visit to the Daycare centre tires her a lot and I often have to give her a bedrest when she gets home but I think she enjoys it. Jasmin is just slightly taller than me; about 1.60m and weighs about 40 kilos; perhaps becos of the movement disorder illness which impairs her daily life causing speech, breathing and swallowing difficulties. She gets occasionally her menstruation too. My highlight of each day is when she smiles or laugh at my silly jokes or when I sing offkey, when she gives me a kiss or put her arms around me, I'm just gratefull for small mercies and for the chance to share each day of our lives together while we can. Community Tags Ashley Treatment, disability, estrogen, encephalopathy, growth hormone, puberty Discuss this article
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Ashley, from Seattle, has static encephalopathy, a condition of the brain which has left her developmentally like an infant. She is unable to walk, speak, and is typically seen propped with pillows, because she dislikes being strapped to her wheelchair in an upright position. She cannot even hold her head up. Apparently at the age of six she started showing signs of early puberty, and as she began to grow bigger, her parents made a plea to her doctors at the Seattle Children's hospital. They requested to have her uterus and breast buds removed, and to start hormone therapy to keep her a child... forever.
