We understand they needed to come out, but we didn’t need it to happen right away.”  The parents elected to have surgery when their daughter was four months old. I had very distinct memories of feeling like a little girl. The pubic area may temporarily appear larger after liposuction because gravity pulls swelling downward from the abdomen toward the mons pubis. Human Rights Watch interview with a psychologist, January 30, 2017. [106] Natalie Nokoff et al., “Prospective Assessment of Cosmesis Before and After Genital Surgery,” Journal of Pediatric Urology 13(1) (2017): 28.e1 - 28.e6, http://www.jpurol.com/article/S1477-5131(16)30279-0/abstract. “, The more they would hurt me, the more I’d protect them—say to myself, ‘Well, that’s my doctor.’ It really became a twisted relationship,”, “The doctors told us it was important to have the surgery right away because it would be traumatic for our child to grow up looking different. I think we have a lot more parents reading about what all this means and really coming to us with the stickier questions.” But, she noted, there remains a gap: “It's kind of hard for people who have no idea about gender and gender identity—if they've never even heard those concepts—to get to that point it takes several sessions of sitting down and talking with family.”[295]. The committee called Switzerland’s current practice a “failure to consult with those directly affected by these procedures in decisions that affect their lives.” The committee called on the Swiss government to ensure that no child is subjected to unnecessary medical treatment, intersex people are provided are provided effective legal regress, and medical professionals receive training on the harmful impact of unnecessary surgical interventions for intersex children. Practitioners who believe delivering complicated information about intersex conditions to parents is beyond their expertise should solicit other specialists—mental health providers and intersex support groups—to provide counseling. Three years later in 1972, when Stella was 15, she came home from the last day of school and her mother said: “We’re going to the hospital for your surgery…to fix your ‘little problem.’” According to Stella, the operation: “Took all the skin off of one cheek of my behind, wrapped it around a cord, shoved it inside of me, and sewed it closed--and then I laid there for 17 days.” She said: “There were people in the middle of the night who would come in, lift up my sheet, and say ‘oh she’s the one!’ and then remark about my genitals.” 17 days later they took the mold out, gave Stella a prescription for dilators to maintain the vagina that had been created without her permission, and sent her home. They understand that, they are looking out for that. [91] Human Rights Watch interview with an endocrinologist, February 23, 2017. [74] Human Rights Watch interview with an endocrinologist, February 1, 2017. Eplasty. Medical professionals would not countenance this kind of brutal surgical intervention today. On May 3, 2017, Human Rights Watch met with the leadership from CARES as well as Dr. Dix Poppas, chief of pediatric urology at Cornell-Weil Medical Center in New York City, and an affiliate of CARES. The chromosomes, gonads, internal or external genitalia in these children—intersex children—differ from social expectations. Two intersex people Human Rights Watch interviewed expressed that they were happy with the outcomes of their early genital surgeries. But when you go to meetings no one says it. "The True Story of John/Joan". An intersex person in Illinois told Human Rights Watch that in 1997 when they were 11 years old they were taken in for a surgery to correct urinary leakage issues. It’s a huge thing to think that you’re not worthy of real care at all.”. It also sets up the false dichotomy of child autonomy versus giving the child a “normal” life—when there is no evidence that these surgeries deliver on that promise. “This decision is made in the end with our surgeons,” she explained. One gynecologist who works on a DSD team told Human Rights Watch about how her team manages cases of patients with CAH: “Previously the dogma with CAH was a feminizing genitoplasty to minimize the clitoris,” she said. In contrast to this practitioner’s assertion, in a 2013 report, Juan E. Méndez, the UN Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, explained: Medical treatments of an intrusive and irreversible nature, if they lack a therapeutic purpose, constitute torture or ill-treatment when enforced or administered without the free and informed consent of the person concerned. Thomas and Tracey echoed what Human Rights Watch heard from other parents—that the tone of the consultations suggested the doctors thought they, in rejecting surgery, were being bad parents. “The point parents have to understand is that where [they] think the problem is over—it’s not the end,” said an intersex woman in New York. [42], 2016: Physicians publish “Global Disorders of Sex Development Update since 2006,” stating: “[t]here is no evidence regarding the impact of surgically treated or non-treated DSDs during childhood for the individual, the parents, society or the risk of stigmatization…[t]here is still no consensual attitude regarding indications, timing, procedure and evaluation of outcome of DSD surgery.”[43]. What problem were you solving with surgery anyway?”, Another urologist said that in her experience, parents advocating strongly for surgery was rare. We reassure them that there is not going to be anything bad that happens to the child waiting for six months.”, e're doing very, very few feminizing surgeries in general…. Some adults interviewed for this report who had undergone surgery talked about traumatizing results even from “nerve-sparing” surgeries. [359] Human Rights Watch interview with a urologist, February 23, 2017. Parents come in stressed—they’re not letting grandparents change diapers because they don’t want them to know. Gregorio, “Should Surgeons Perform Irreversible Genital Surgery on Children?” Newsweek, April 26, 2017, http://www.newsweek.com/should-surgeons-perform-irreversible-genital-surgery-children-589353. In a 2009 report to the United Nations General Assembly, the Special Rapporteur on the right to Health stated: “Guaranteeing informed consent is fundamental to achieving the enjoyment of the right to health,” emphasizing that governments are required to “ensure that information is fully available, acceptable, accessible and of good quality,” and that information should be “imparted and comprehended by means of supportive and protective measures such as counselling and involvement of community networks.”[206] However, the special rapporteur observed that: With regard to surgical procedures on children, the special rapporteur called on providers to “strive to postpone non-emergency invasive and irreversible interventions until the child is sufficiently mature to provide informed consent,” arguing that such interventions are “particularly problematic in the case of intersex genital surgery, which is a painful and high-risk procedure with no proven medical benefits.” [208]. [255] The World Professional Association for Transgender Health (WPATH),“Standards of Care for the Health of Transsexual, Transgender, and Gender Nonconforming People Version 7.”. The fat in this area can reach a size that makes some people self-conscious and uncomfortable while wearing tight-fitting clothing such as leggings, skinny jeans, swimsuits, underwear, and tight dresses. Human Rights Watch and interACT would like to thank: All interviewees, named and unnamed, The AIS-DSD Support Group, Arlene Baratz, MD, Georgiann Davis, PhD, the interACT staff and board of directors, and Bo Laurent. Three weeks later, we had a meeting with a urologist that the doctors scheduled for us, and then at four months of age they scheduled surgery to remove the undescended testes. “So all we have is unfortunately a very uninformed debate. Human Rights Watch interviewed 21 healthcare practitioners in the course of researching this report. [23], 2010: Thirty-two academicians write to the Office of Human Research Protections (OHRP) and the US Food and Drug Administration (FDA) calling for an investigation into alleged human research violations involving intersex fetuses and children. When Ariel, now 24, was 17, she visited her pediatrician for her final check-up before transitioning to an adult practitioner. Individuals with certain intersex traits may be exposed to an increased risk of gonadal cancer over time. [334] Human Rights Watch interview with Thomas A., location withheld, December 6, 2016. He said no, so she waited in the parking lot until he left that night, broke in, and stole them. “Concluding observations on the initial report of Germany,” CRPD/C/DEU/CO/1, May 13, 2015. And my daughter was screaming and telling her to stop and she wouldn’t stop. [33] David Levine, et al., “Office-Based Care for Lesbian, Gay, Bisexual, Transgender, and Questioning Youth.” Pediatrics 132(1) (2013), http://pediatrics.aappublications.org/content/132/1/e297. [338] Human Rights Watch interview with Jackie N., California, October 25, 2016. As documented in this report, doctors at different facilities across the US have observed markedly different rates of surgeries being performed. irreversible surgical imposition of a sex assignment that the individual later rejects. I think no one's reporting what's actually happening in the United States and I think it's really important to get an accurate representation of what's actually going on because... depending on who you're talking to you're getting a very different view. They giggle at me, and I’ve had one person refuse to draw my blood before.”, An intersex 23-year-old in New York said they got sepsis in 2014 after hesitating to seek care for symptoms that were, according to them, “very painful and clearly a UTI.” They stayed in bed for four days until finally deciding to call their doctor. “That really messed with my concept of sexuality. “Salt-wasting CAH,” which impacts chemicals needed by the adrenal gland to make cholesterol into cortisol, aldosterone, and androgen, can be life-threatening. In its 2016 review of the Netherlands, the CEDAW committee, the committee that monitors states’ compliance with the Convention on the Elimination of all Forms of Discrimination Against Women, raised concern about, “Medically irreversible sex-assignment surgery and other treatments are performed on intersex children” and recommended that the government “[d]evelop and implement a rights-based health-care protocol for intersex children which ensures that children and their parents are properly informed of all options and that children are, to the greatest extent possible, involved in decision-making about medical interventions and that their choices are fully respected.”[376], It its 2016 review of Switzerland, the CEDAW committee cited insufficient support for intersex people who have survived involuntary and medically unnecessary surgeries—referring to the surgeries as “disfiguring surgical procedures when they were babies and children.” The committee also condemned “[t]he pressure placed on parents of intersex children by medical professionals, the media and society at large, often forces them to give their consent for so called ‘medical procedures’ justified by psychosocial indications” and said that aggrieved intersex persons’ access to legal remedies is “extremely limited” by a short statute of limitations that expires by the time they become adults.

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