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Nine-year-old girl begins growth-stunting treatment

TRIBUNE PHOTO: JONATHAN HOUSE - Blues mother Cyndy helps stretch out her legs in the pool of Cyndys mother-in-laws house.Little Blue is now on track to stay little.

But her growth will be stunted through hormone therapy only — without a surgery that might have landed her family in court.

Blue is a 9-year-old with a host of medical conditions, and is unable to talk or take care of herself. Blue’s mother Cyndy feels it’s best for her daughter to stay close to the size she is now. Oregon Health & Science University doctors, administrators and ethicists appear to agree with her.

As explained in a Jan. 19 Portland Tribune story, “The ethics of Blue s body,” the Milwaukie girl is significantly disabled by a rare genetic condition known as CDKL5 (cyclin-dependent kinase-like 5). This, her mom suspects, is the cause of her brittle bones that have already broken eight times, mostly during seizures.

The idea of Blue, who is now about 4 feet tall, getting as big as Cyndy was not only a daunting prospect for her daily care needs but also dangerous, her mom says. If Blue gained length and weight, her bones could be even more likely to break.

So last winter Cyndy, who declined to give the family’s surname, asked her daughter’s medical team at OHSU to perform the controversial Ashley Treatment — a combination of hormones and surgery that would stunt Blue’s growth.

However, after publication of the Tribune story, Cyndy learned that in Oregon that might be illegal.

Ugly history

In 2002, then-Gov. John Kitzhaber, a former emergency room doctor, signed a law banning sterilization of people with disabilities. It was passed to close an ugly chapter in the state’s history.

According to a handbook produced by Disability Rights Oregon, more than 2,600 Oregonians were forcibly sterilized by the state under a program that ended in 1983. This happened in institutions for people with mental or physical disabilities, sexual minorities or criminals.

Because doctors worried that using growth-stunting hormones could cause painful menses and breast growth through rapid onset of puberty, the Ashley Treatment included surgically removing the uterus and breast buds in female patients, effectively sterilizing them.

The realization that this would have to meet a high legal bar of medical necessity — such that might be fought over for years in the courts — caused OHSU officials to decline to perform the surgery, according to Cyndy.

OHSU officials and Blue’s endocrinologist, Dr. Bruce Boston, declined interviews for this story.

Cyndy was faced with having to travel out of state with a medically fragile daughter to perform the surgery. But, on the advice of Boston and a secret online group of parents around the world who are chemically stunting their special-needs children’s growth, she recently began only the hormone part of the treatment.

TRIBUNE PHOTO: JONATHAN HOUSE - Cyndy cradles her daughter Blue during a visit to Cyndy's mother-in-law's house. Blue enjoys the trips because her grandmother has a pool that she can float in.

Others doing it

Since the widely publicized 2007 controversy over the Ashley Treatment, Ashley’s Seattle-area parents have spawned an online community of parents of significantly disabled children who are interested in the treatment.

Jenn Hooper, whose daughter Charley had the treatment in New Zealand, says she estimates nearly 80 children worldwide have had their growth chemically attenuated, about two-thirds of whom are boys.

Hooper says her daughter also had positive side effects from the estrogen, such as relaxation of her dangerously tense muscles and a dramatic decrease in seizures.

Growth attenuation “has been the single best decision we have ever made for Charley,” Hooper writes in an email. “I believe it should be freely discussed with families of the profoundly disabled children and yes, offered as a treatment choice, just like so many other treatments are already discussed and offered. It should be made available to those that want it but perhaps even more importantly, information around it should be easily accessible and offered for their consideration.”

A few parents have tried the hormone therapy without the surgery and told Cyndy it was successful without the reputed side effects of painful puberty.

A woman from Texas, who asked to remain anonymous due to fear of reprisals, says her daughter with rare Aicardi Syndrome weathered the hormones well without surgery. But the family has had to travel two or three times a year to an endocrinologist 800 miles away who is willing to prescribe the hormones. Her 12-year-old is likely to remain less than 5 feet tall.

“She has not had any complications with the treat(ment),” the woman writes via social media. “She has seizure(s) on a daily basis and this hasn’t worsened with (growth attenuation) therapy. We are very happy with the result ... We would choose (growth attenuation) treatment again.”

Her only regret, she says, was that she wasn’t able to start the treatment sooner.

If Blue does start to experience pain from the treatment, “it’s easy to immediately stop,” Cyndy says of the Estradiol hormone patch on Blue’s tummy. “You literally just take the patch off.”

But Cyndy thinks that is unlikely. Blue has exhibited a very high tolerance to pain.

TRIBUNE PHOTO: JONATHAN HOUSE - A small patch on Blue's tummy delivers her the hormones that are part of the controversial Ashley Treatment to stunt her growth.

Necessary or convenient?

Disability Rights Oregon is charged with upholding the law against forced sterilization. The law states that children under age 15 are simply too young to give consent for such a procedure, even if parents or guardians try to give consent for them. Blue is likely unable to understand the consequences of sterilization in any case, and therefore unable to ever give informed consent. Waiting until she is older, and fully grown, would nullify the need for the procedure.

Disability Rights Oregon Executive Director Bob Joondeph says the essential question is whether Blue should be allowed to become an adult.

“If she is being treated differently because of her intellectual disability, that would violate her human rights and perhaps her legal rights,” Joondeph says, noting that a typically developing child could conceivably also have a medical need for sterilization or growth stunting, preventing her from becoming a fully grown adult. “The question is whether that type of experience for her is being discounted (because of her disability).”

Joondeph stresses that he is not familiar enough with the facts of Blue’s case to pass judgment. But he hopes that OHSU’s ethics panel review of Blue’s case included someone with a disability rights perspective, to ensure that the hormones are “being given for a medical reason and not for the convenience of the parents.”

An OHSU spokesperson confirmed that people with training in disability rights and clinical ethics were involved in the case review.

Cyndy is firm in her belief that this is the right course for her daughter and has even resolved to travel out of state if a hysterectomy becomes necessary.

“I would find a way. I would do anything I had to do to get her where she needs to be,” she says.

Cyndy adds that she hopes the hormone-only stunting works more than just for her daughter’s sake, but for better quality of life for other kids with severe disabilities, too.

“In the back of my mind, I hope this goes well so I can show people that this can work without the scary part — without the controversial part,” she says.

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