The Ashley Treatment refers to a controversial set of medical procedures performed on an American child, "Ashley X". Ashley, born in 1997, who has severe
developmental disabilities
Developmental disability is a diverse group of chronic conditions, comprising mental or physical impairments that arise before adulthood. Developmental disabilities cause individuals living with them many difficulties in certain areas of life, espe ...
due to
static encephalopathy; she is assumed to be at an infant level mentally, but continues to grow physically. The treatment included
growth attenuation Growth attenuation is an elective medical treatment which involves administering estrogen to cause closure of the epiphysis, epiphyses of the bones (Epiphyseal plates), resulting in a reduced adult height. Since the 1960s this treatment has been per ...
via
high-dose estrogen
High-dose estrogen (HDE) is a type of hormone therapy in which high doses of estrogens are given. When given in combination with a high dose of a progestogen, it has been referred to as pseudopregnancy. It is called this because the estrogen and p ...
s,
hysterectomy, bilateral
breast bud removal, and
appendectomy.
In June 2016, after 18 years of searching, Ashley's condition was determined to be the result of a ''de novo'' (not inherited, i.e. a
mutation
In biology, a mutation is an alteration in the nucleic acid sequence of the genome of an organism, virus, or extrachromosomal DNA. Viral genomes contain either DNA or RNA. Mutations result from errors during DNA replication, DNA or viral repl ...
) and non-mosaic
single-nucleotide polymorphism
In genetics, a single-nucleotide polymorphism (SNP ; plural SNPs ) is a germline substitution of a single nucleotide at a specific position in the genome. Although certain definitions require the substitution to be present in a sufficiently lar ...
in the
GRIN1
Glutamate MDAreceptor subunit zeta-1 is a protein that in humans is encoded by the ''GRIN1'' gene.
The protein encoded by this gene is a critical subunit of N-methyl-D-aspartate receptors, members of the glutamate receptor channel superfamily w ...
gene,
which is implicated in
neurotransmission
Neurotransmission (Latin: ''transmissio'' "passage, crossing" from ''transmittere'' "send, let through") is the process by which signaling molecules called neurotransmitters are released by the axon terminal of a neuron (the presynaptic neuron), ...
.
The principal purpose of the treatment was to improve Ashley's quality of life by limiting her growth in size, eliminating
menstrual cramps
Dysmenorrhea, also known as period pain, painful periods or menstrual cramps, is pain during menstruation. Its usual onset occurs around the time that menstruation begins. Symptoms typically last less than three days. The pain is usually in th ...
and bleeding, and preventing discomfort from large breasts. The combination of the surgery and the estrogen therapy attracted much public comment and
ethical
Ethics or moral philosophy is a branch of philosophy that "involves systematizing, defending, and recommending concepts of right and wrong behavior".''Internet Encyclopedia of Philosophy'' The field of ethics, along with aesthetics, concerns ma ...
analysis in early 2007, both supportive and condemning.
Ashley's parents granted their first written interview to
CNN Health
CNN (Cable News Network) is a multinational cable news channel headquartered in Atlanta, Georgia, U.S. Founded in 1980 by American media proprietor Ted Turner and Reese Schonfeld as a 24-hour cable news channel, and presently owned by the ...
in March 2008,
and their second to ''
The Guardian
''The Guardian'' is a British daily newspaper. It was founded in 1821 as ''The Manchester Guardian'', and changed its name in 1959. Along with its sister papers ''The Observer'' and ''The Guardian Weekly'', ''The Guardian'' is part of the Gu ...
'' in March 2012.
In addition, ''The Guardian'' published two interviews with mothers of a girl
and a boy
who had completed the treatment. A 2014 TV program and article tell the similar story of a girl in
New Zealand
New Zealand ( mi, Aotearoa ) is an island country in the southwestern Pacific Ocean. It consists of two main landmasses—the North Island () and the South Island ()—and over 700 smaller islands. It is the sixth-largest island count ...
.
A survey on growth attenuation among
pediatric endocrinologists was published in July 2015.
Background
Ashley was born with a severe brain impairment of genetic cause,
termed a "static
encephalopathy
Encephalopathy (; from grc, ἐνκέφαλος "brain" + πάθος "suffering") means any disorder or disease of the brain, especially chronic degenerative conditions. In modern usage, encephalopathy does not refer to a single disease, but r ...
" because it does not improve. Although she sleeps and awakens, and breathes on her own, she is unable to raise her head, sit up, hold an object, walk, or talk, and must be tube-fed. Nonetheless, she is alert and responsive to her environment, particularly enjoying the music of
Andrea Bocelli
Andrea Bocelli (; born 22 September 1958) is an Italian tenor and multi-instrumentalist. He was born visually impaired, with congenital glaucoma, and at the age of 12, Bocelli became completely blind, following a brain hemorrhage resulting fr ...
. Her parents have nicknamed Ashley "Pillow Angel", because she always remains where she is placed, which is usually on a pillow.
In 2004 when Ashley was six and a half years old, she began to show signs of
puberty
Puberty is the process of physical changes through which a child's body matures into an adult body capable of sexual reproduction. It is initiated by hormonal signals from the brain to the gonads: the ovaries in a girl, the testes in a bo ...
and her parents and doctors began to anticipate a variety of issues common in children with severe neurological impairments. As these children grow larger, it takes more strength to move them and provide basic bodily care, raising the risk of
pressure sores from immobility.
Precocious puberty
In medicine, precocious puberty is puberty occurring at an unusually early age. In most cases, the process is normal in every aspect except the unusually early age and simply represents a variation of normal development. In a minority of childr ...
is common in children with various forms of severe brain damage. The early appearance of secondary sexual characteristics is often distressing to parents and caretakers. Many parents of severely disabled children explore possible ways to avoid having to deal with menstruation and fertility in a
diapered child. A variety of treatments have been used over the last several decades to deal with these issues.
In July 2004, Ashley had a
hysterectomy (to prevent
menstruation) and surgical removal of her
nascent breast buds (to prevent development). She also underwent an
appendectomy (because Ashley wouldn't be able to vocalize symptoms). The surgery was performed at
Seattle
Seattle ( ) is a seaport city on the West Coast of the United States. It is the seat of King County, Washington. With a 2020 population of 737,015, it is the largest city in both the state of Washington and the Pacific Northwest regio ...
's
Children's Hospital and Regional Medical Center
Seattle Children's, formerly Children's Hospital and Regional Medical Center, formerly Children's Orthopedic Hospital, is a children's hospital in the Laurelhurst neighborhood of Seattle, Washington. The hospital specializes in the care of infa ...
. In addition, in December 2006 she completed
estrogen therapy through dermal patches, which sped up the natural closure of her
growth plates
The epiphyseal plate (or epiphysial plate, physis, or growth plate) is a hyaline cartilage plate in the metaphysis at each end of a long bone. It is the part of a long bone where new bone growth takes place; that is, the whole bone is alive, with ...
.
Ashley's story first broke in October 2006, in the ''
Archives of Pediatrics & Adolescent Medicine
''JAMA Pediatrics'' is a monthly peer-reviewed medical journal published by the American Medical Association. It covers all aspects of pediatrics. The journal was established in 1911 as the ''American Journal of Diseases of Children'' and renamed i ...
''. In January 2007, her parents, who wish to remain anonymous, set up a blog to explain their reasoning for their decision and to share their story with families of other children who might benefit.
Arguments for the treatment
The parents state that they sought such treatment for the best interests of their daughter, namely, to enable them to personally continue constant care for her at home; to maximize her inclusion in family activities; to avoid the cramps and discomfort associated with menstruation; and to avoid the discomfort from large breasts (which runs in Ashley's family) while lying down or strapped in the chest area while in her wheelchair. Furthermore, they cited additional side benefits: to reduce the risk of bedsores; to prevent
breast cancer
Breast cancer is cancer that develops from breast tissue. Signs of breast cancer may include a lump in the breast, a change in breast shape, dimpling of the skin, milk rejection, fluid coming from the nipple, a newly inverted nipple, or a r ...
and fibrocystic growth (both of which have occurred in her family); to prevent
pregnancy
Pregnancy is the time during which one or more offspring develops (gestation, gestates) inside a woman, woman's uterus (womb). A multiple birth, multiple pregnancy involves more than one offspring, such as with twins.
Pregnancy usually occur ...
; and to prevent
appendicitis
Appendicitis is inflammation of the appendix. Symptoms commonly include right lower abdominal pain, nausea, vomiting, and decreased appetite. However, approximately 40% of people do not have these typical symptoms. Severe complications of a ru ...
, which occurs in 5% of the population and which would be difficult to diagnose in Ashley as she would be unable to communicate the symptoms. They also believe that without
secondary sexual characteristics, Ashley will be less vulnerable to
sexual abuse
Sexual abuse or sex abuse, also referred to as molestation, is abusive sexual behavior by one person upon another. It is often perpetrated using force or by taking advantage of another. Molestation often refers to an instance of sexual assa ...
by future caregivers when her parents will no longer be able to care for her.
In an article published in June 2009 on Growth Attenuation, two pediatric endocrinologist and two bioethicists concluded as follows:
The two bioethicists from the previous article also published an article in January 2010 cataloging and countering the criticisms that targeted the Ashley Treatment, and concluded as follows:
Results
After a year, Ashley's parents considered her treatment a success: She will never experience menstrual discomfort and cramps, she will always be flat chested and avoid breast related discomfort and other issues, and with her growth plates closed, she has reached her adult height of 53 inches (135 cm, or 4 ft 5 in) and weight of 63 pounds (29 kg), an estimated reduction of her potential height and weight of 20% and 40%, respectively.
[Burkholder, Am]
Disabled girl's parents defend growth-stunting treatment
CNN
CNN (Cable News Network) is a multinational cable news channel headquartered in Atlanta, Georgia, U.S. Founded in 1980 by American media proprietor Ted Turner and Reese Schonfeld as a 24-hour cable news channel, and presently owned by ...
, retrieved 2008-03-12
Reactions
In the United States,
Arthur Caplan
Arthur L. Caplan (born 1950) is the Drs. William F. and Virginia Connolly Mitty Professor of Bioethics at New York University Grossman School of Medicine and the founding director of the Division of Medical Ethics.
Caplan has made many contribut ...
, of the
University of Pennsylvania's Center for Bioethics, has criticized the Ashley Treatment in an
MSNBC
MSNBC (originally the Microsoft National Broadcasting Company) is an American news-based pay television cable channel. It is owned by NBCUniversala subsidiary of Comcast. Headquartered in New York City, it provides news coverage and politi ...
editorial, arguing that it is "a pharmacological solution for a social failure—the fact that American society does not do what it should to help severely disabled children and their families."
Three renowned bioethicists spoke in support of the treatment and discussed different aspects of it in opinion statements presented by Scientific American.
Disability rights advocates, including
Not Dead Yet
Not Dead Yet (NDY) is a United States disability rights group that opposes assisted suicide and euthanasia for disabled people. Diane Coleman, JD, is the founder and president of this national group. Stephen Drake, a research analyst with NDY ...
and
Feminist Response in Disability Activism (FRIDA), called the treatment "invasive medical experimentation", "mutilation", "desexualization", and a violation of Ashley's
human rights
Human rights are moral principles or normsJames Nickel, with assistance from Thomas Pogge, M.B.E. Smith, and Leif Wenar, 13 December 2013, Stanford Encyclopedia of PhilosophyHuman Rights Retrieved 14 August 2014 for certain standards of hu ...
. FRIDA called on the
American Medical Association
The American Medical Association (AMA) is a professional association and lobbying group of physicians and medical students. Founded in 1847, it is headquartered in Chicago, Illinois. Membership was approximately 240,000 in 2016.
The AMA's sta ...
to condemn the Ashley Treatment. The
Disability Rights Education and Defense Fund
The Disability Rights Education and Defense Fund (DREDF), located in Berkeley, California, and Washington, DC, USA is a national cross-disability civil rights law and policy center directed by individuals with disabilities and parents who have chi ...
(DREDF) declared, "we hold as non-negotiable the principle that personal and physical autonomy of all people with disabilities be regarded as sacrosanct".
Ashley's parents reported that 95% of the 5,000 emails they received were in support of the treatment, many of these testimonies and support emails are posted on Ashley's blog.
The parents indicated that there was especially strong support among parents and caregivers of children with similar conditions to Ashley's, those who have the direct experience. They cite several ethicists in support of the treatment, including
George Dvorsky
George P. Dvorsky (born May 11, 1970) is a Canadian bioethicist, transhumanist and futurist. He is a contributing editor at io9 and producer of the ''Sentient Developments'' blog and podcast. He was chair of the board for the Institute for Et ...
,
Peter Singer
Peter Albert David Singer (born 6 July 1946) is an Australian moral philosopher, currently the Ira W. DeCamp Professor of Bioethics at Princeton University. He specialises in applied ethics and approaches ethical issues from a Secularit ...
,
Norm Fost, and
Doug Diekema.
In the United Kingdom, the
British Medical Association stated, "If a similar case occurred in the UK, we believe it would go to court and whatever decision was ruled would be in the best interests of the child." Dr. Peter Hindmarsh, Professor of Paediatric Endocrinology at
Great Ormond Street Hospital
Great Ormond Street Hospital (informally GOSH or Great Ormond Street, formerly the Hospital for Sick Children) is a children's hospital located in the Bloomsbury area of the London Borough of Camden, and a part of Great Ormond Street Hospit ...
was troubled by the treatment decision being taken by a hospital
ethics committee
An ethics committee is a body responsible for ensuring that medical experimentation and human subject research are carried out in an ethical manner in accordance with national and international law.
Specific regions
An ethics committee in the E ...
. I am not sure the ethics committee was the right place to decide,' he said, adding that it was not clear who represented the child's interests when it went before the committee."
In
Canada
Canada is a country in North America. Its ten provinces and three territories extend from the Atlantic Ocean to the Pacific Ocean and northward into the Arctic Ocean, covering over , making it the world's second-largest country by tot ...
, ethicist
Arthur Schafer's nationwide opinion piece defending the operation as justifiable considering Ashley's comfort engendered criticism from disability rights activists such as
Dave Hingsburger of the
York Central Hospital and Keenan Wellar from the LiveWorkPlay
self-advocacy The term self-advocacy, which means speaking up for oneself and one's interests, is used as a name for civil rights movements and mutual aid networks for people with intellectual and developmental disabilities. The term arose in the broader civil ...
organization. In a rebuttal, Wellar attacked the notion that Ashley's limited mental abilities justified the decisions made on her behalf: "Infants have human rights even though they can't speak for themselves. Why should Ashley have received any less consideration?"
On May 8, 2007, an investigative report done by Disability Rights Washington (formerly The Washington Protection and Advocacy System) in conjunction with The
Utah Disability Law Center criticized the hospital that performed this controversial procedure for violating Washington State law,
which is disputed by the family's attorney.
References
External links
The original medical paper by Drs Gunther and Diekema from Arch Ped Adolesc Med that described the treatment and led to the media publicity.
{{EthicsCases
Medical controversies in the United States
Disability rights
Neurology procedures
Endocrine procedures