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Mother asks doctors to perform controversial Ashley Treatment to stunt disabled daughter's growth

TRIBUNE PHOTO: JAIME VALDEZ - Cyndy carries her daughter, Blue, to the bath to wash her hair. Her morning routine - including tube feeding, daily sponge baths and stripping her sheets - takes 2 1/2 hours.

At 3 years old, Blue was not expected to survive.

Six years ago, doctors sent her home to die. Calcium was leaching out of her bones and nothing they tried would stop it.

Her mother, Cyndy, who declined to give the family’s surname, took her little girl home from Doernbecher Children’s Hospital and prepared for the end.

Ever since Blue was diagnosed with infantile spasms at 2 months old, she had been on a cocktail of medications. The prescriptions never succeeded at stopping her seizures, but did make her constantly groggy or asleep.

“She was on so much medication that she wasn’t waking up or anything,” Cyndy says. Before her daughter died, “I just really wanted to get to know her, so I just started weaning her off the meds.”

What Cyndy found was the more medications she removed, the more alert and responsive her formerly catatonic daughter became. Blue began smiling, had fewer seizures and — when Cyndy took her back for tests — she didn’t have hypercalcemia anymore.

Blue eats “normally” now, by which her mom means a formula of complete nutrition via a plastic tube through her stomach wall, rather than an intravenous solution of saline. She lives at her Milwaukie home with two of her three siblings, goes on outings and enjoys music.

Though permanently and profoundly disabled, Blue is alive and alert.

She also is growing.

• • •

Blue’s room is a pink palace of entertainment. It has to be; sometimes she stays in there for weeks at a time recovering from illness or injury.

She loves looking at the posters of herself and Christian music pop star Candice Russell from her Make-a-Wish days (see video below), or the pictures of the three young friends that she has lost to their own medical troubles, or the television playing Disney Junior.

Blue has fractured her right femur twice and her left femur six times, mostly during seizures. After the last bad break, she had surgery to put a rod through her leg bone. Her bones are too delicate to use a plaster cast so her caregivers could only use soft wraps.

The loss of calcium in her bones is no longer progressing, but the damage from the hypercalcemia has been done. Her mom says she has the bones of an 80-year-old with osteoporosis.

“The only way known to put back in (calcium) is bearing weight and walking,” Cyndy says, “but she can’t bear weight, so there’s not a lot of options for her.”

Oregon Health & Science University, which treats Blue, declined interviews for this story. (Officials released a statement that can be read below.)

According to Cyndy, the proposed treatment for Blue is a drug that forces the calcium back into her bones. But if it fails, it could have the opposite effect, leaving Blue with too little calcium in her blood.

Cyndy says she is terrified that the drug’s effects will send Blue into another spiral.

The night before the appointment with the endocrinologist, she stayed up all night trying to come up with a different solution.

Online, she happened upon a story she’d heard long ago, and everything clicked.

TRIBUNE PHOTO: JAIME VALDEZ - Mom Cyndy repositions Blue on the family couch.

• • •

The Ashley Treatment is a rare medical procedure. It is even more rarely talked about publicly due to the passionate feelings it sparks.

The procedure is named after patient Ashley X in Seattle, whose parents had the procedure done in 2004. Their decision to talk publicly — yet anonymously, online — in 2007 exploded into a worldwide debate on the ethics of hormonally stunting the growth of a child with disabilities. For girls, this also includes removing breast buds and the uterus to prevent painful breast growth and menses, in effect sterilizing the child.

“This is a fundamental alteration of a fundamental function,” says Rud Turnbull, a retired disability law expert from the University of Kansas. Turnbull says major considerations include whether Blue is capable of consenting to the procedure and whether there are any alternatives, such as more public funding to support Blue’s caregiving or a different medical option.

“This is an unusual procedure. It is a fundamental change of the young lady,” he says. “You want the issue debated as much as possible.”

Medical terms

The Ashley Treatment (Growth Attenuation or growth stunting): A controversial procedure in girls with profound disabilities in which the breast buds and uterus are removed and hormones are given to fuse growth plates and accelerate puberty.

Hypercalcemia: Too much calcium in the blood. Typically a reversible thyroid disorder, but Blue did not respond to treatment.

CDKL5 (cyclin-dependent kinase-like 5): A rare genetic condition that alters a protein needed for development. Likely the cause of Blue’s intractable seizure disorder, biochemical imbalances and atypical brain development.

Brittle bone disease: A severe lack of bone density.

Pediatric medical bioethicist Benjamin Wilfond of Seattle Children’s Research Institute, part of the medical group where the procedure was first performed, co-wrote a paper in 2010 on the competing ethical views of the procedure.

The paper recommends this type of growth attenuation only be considered for a rare population — the one in a thousand people with disabilities who have so little physical and intellectual function that they will always be fully dependent on caregivers and incapable of making their own decisions.

Wilfond says some in the 20-person working group that produced the paper remained vehemently against the procedure under any circumstances. He says he finds their opinions rooted in the long and ugly history of institutionalization and forced sterilization of people with disabilities.

“To the extent that they are acutely aware that people with disabilities, in general, have been mistreated by society, they interpret this through that lens,” he says. “It incites all of these feelings of oppression and injustice and of being mistreated, and they said that’s what they see in this.”

Wilfond says he believes some of the public outrage is based on a lack of exposure to how families of people with profound disabilities live and thrive. He says he believes the family is making the best of a difficult situation.

“This is a family who is caring for their child and providing comfort for their child,” he says.TRIBUNE PHOTO: SHASTA KEARNS MOORE - Blue, 9, undergoes a full-body X-ray to determine the density of her bones while her mom tries to keep her still.

• • •

Cyndy says her daughter’s favorite thing in the world is skin-to-skin contact and being held.

If she grows to be as big as her mother, Cyndy believes Blue’s quality of life would suffer in myriad ways.

“Her having a bowel movement could literally end her day,” Cyndy says. “Where would I change her if she’s as big as me or as tall as me?”

Blue is about 4 feet tall and weighs 48 pounds. If her mother’s request to Doernbecher Children’s Hospital for growth attenuation is approved — as of press time Oregon Health & Science University would only say that it is still under serious consideration, see statement below — Blue’s growth would slow and then stop. She would still age, but would remain short and light.

Perhaps most importantly, her bones just might work on getting more dense instead of longer.

• • •

Wilfond says he is deeply worried by the family’s decision to talk publicly about their desire for the procedure.

“While this may be a very reasonable thing for parents to decide to do ... the way political discourse has gotten in this country, it’s so nasty,” he says. “There will be somebody who is sending her death threats. I mean it very sincerely. There are crazy people out there.”

Cyndy says she wants the world to know her story because she wants people to understand the realities of taking care of a person with profound disabilities. She believes Blue would want this and that it is in her daughter’s long-term best interests. While she believes Blue can understand people, she also doesn’t believe she will ever be capable of consenting to sex or be able to bear children. Because of Blue’s brittle bones, Cyndy believes more length and weight ultimately will confine her to bed.

Cyndy says she has been forced to make countless huge medical decisions for Blue and doesn’t see this as different.

“I think that in every other aspect of her life, I’ve been designated as the person who has to make decisions for her, and I’ve taken on that responsibility,” she says. “I also know that she can tell me things that other people can’t understand. ... I feel like I know her, and I know what she would want and there’s just no arguing that.”

Statement from OHSU's Chief Medical Officer, Dr. Charles Kilo:

At OHSU we take very seriously our responsibility to provide the highest quality, compassionate care based on the most current research evidence, the patient's individual risks and benefits from potential interventions, the patient’s unique health state and diagnos(es), and the family’s preferences and values. To that end, a team of health care experts from across the institution, including physicians, nurses, ethicists, patient advocates and administrators, are carefully evaluating options to achieve the best possible medical outcome and quality of life for the patient. A path forward will be determined in consultation with the patient's family.

Blue's Make-a-Wish video with pop star Candice Russell:

Shasta Kearns Moore
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Facebook: ShastaKearnsMoore

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