Pillow Angels and Unicorn Dreams

CTV.ca News Staff

Parents of a nine-year-old U.S. girl with the mental ability of a three-month-old baby are defending their reasons for using medical treatments to keep their daughter child-sized for the rest of her life.

The severely disabled Seattle girl, named Ashley, suffers from a type of brain damage doctors call static encephalopathy that will not improve.

She cannot walk, talk, keep her head up, and is fed through a tube.

Her parents call her "Pillow Angel" because she stays wherever they place her, usually on a pillow.

Ashley -- who doctors expect to have a normal lifespan -- has had a hysterectomy, surgery to block breast growth and undergone hormone treatment that will limit her growth.

The process became public when Ashley's doctors published her case in a U.S. medical journal last year, provoking fevered debate on the ethics surrounding the treatment of disabled children.

Ashley's parents decided to go public with a blog, which was launched Jan. 1, explaining their choice.

"Ashley has not shown material progress in her mental ability since she was three months of age, she is dependent on us in every way (including position change in bed), she can't hold a toy, and we're not sure she even recognizes us," wrote her parents, Seattle residents who have chosen to stay anonymous.

But they say the youngster loves music and kicks and moves her arms when she likes a song.

Her favourite musician is Andrea Bocelli, her parents say.

Their daughter, who goes to a school for special needs children, is alert and aware of her environment, they wrote.

They have defended their decisions, saying that keeping their daughter small will make her bed-ridden existence more comfortable and it will make it easier for them to move her around.

"As a result we will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings (for example, in the family room, backyard, swing, walks, bathtub, etc) instead of lying down in her bed staring at TV (or the ceiling) all day long," they wrote.

Ashley's parents say they are currently near the limits of their ability to lift their daughter at her weight of 65 pounds.

"Therefore, an additional 50 pounds would make all the difference in our capacity to move her. Furthermore, other than her Mom and Dad the only additional caregivers entrusted to Ashley's care are her two Grandmothers, who find Ashley's weight even more difficult to manage. We tried hard and found it impossible to find qualified, trustworthy, and affordable care providers," they wrote.

Keeping their daughter small will also prevent bedsores and infections, Ashley's parents say.

In their blog, which includes photographs of Ashley, her parents wrote that the treatment is not intended to convenience the caregiver.

"Rather, the central purpose of the treatment is to improve Ashley's quality of life," they wrote.

Three years ago, Ashley's parents made the highly unusual decision to keep their daughter child-sized when they observed early signs of puberty.

The procedures will keep Ashley always at about four feet, five inches, and 75 pounds making it easier for her to be moved.

Ashley's parents also opted for surgery to remove their daughter's uterus and breast buds in consultation with doctors at Seattle Children's Hospital in 2004.

"Ashley has no need for her uterus since she will not be bearing children," they say, adding that the decision means she will not experience menstrual cramps.

The decision to remove her breast buds was partly to avoid sexualizing Ashley in the eyes of her caregiver, but mainly so that she would not experience discomfort when lying down.

"If the concern has something to do with the girl's dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity," they said.

"The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby."

Ashley also underwent an appendectomy during her surgery, as she would not be able to communicate pain if she were to suffer from appendicitis, they said.

But reaction to the treatment on websites has included charges that the couple's behaviour was "despicable" and "Frankenstein-esque."

One reader wrote a note that said "Eugenics was my first thought" while another wrote "I find this offensive if not perverse."

Ashley's treatment had been described as "ill-advised" by Jeffrey Brosco, a pediatrician at the University of Miami.

However, he applauded doctors for publishing the case and helping to "advance our ethical dialogue" on the topic.

Ashley's parents said the objection that their daughter's treatment interferes with nature is a "ridiculous objection."

"Medicine is all about interfering with nature. Why not let cancer spread and nature takes its course. Why give antibiotics for infections? Even an act as basic as cutting hair or trimming nails is interfering with nature," they wrote.

Some may question how God might view this treatment, Ashley's parents said in a blog entry dated Jan. 3.

"The God we know wants Ashley to have a good quality of life and wants her parents to be diligent about using every resource at their disposal (including the brains that He endowed them with) to maximize her quality of life," they wrote.