When it comes to intersex children, doctors do not always know best

Wednesday, 17 October 2018 13:54 GMT

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Why are so many intersex kids given outdated, harmful treatments when medicine has moved on?

Dr. Arlene M. Baratz is a breast radiologist, mother of two intersex daughters, co-ordinator of medical and research affairs for the AIS-DSD Support Group and chair, Medical and Research Policy Committee at interACT: Advocates for Intersex Youth.

When your child is born with a medical issue, you turn to doctors for help, advice and treatment – even when, like me, you’re a mother and a doctor.

When I went to medical school in the early 1980s I was trained to prescribe estrogen to postmenopausal women to prevent osteoporosis. And that babies born intersex – that is, with atypical chromosomes, gonads, or internal or external sex organs – should have these differences “corrected” by surgery that was kept secret.

As a breast radiologist, I was devastated to learn several years into my career that because prescribing estrogen can actually hurt women, encouraging breast cancer development and cardiovascular problems, I had unintentionally harmed my patients. It was hard to accept, but that’s evidence-based medicine, and that’s what I owe my patients.

In 1990, when my daughters’ intersex was discovered, parents were typically advised to let surgeons “fix” children by erasing their differences, and to keep  intersex a secret. Otherwise, we were told, our kids would later commit suicide.

We’re talking about a lot of children: around 1.7 percent of American babies are born with some intersex variation. One in 2,000 have external genitalia that look different from what’s expected for typical baby boys or girls. Since the 1950s, surgeons have frequently performed “normalising” surgeries so that these children would look the same naked as everyone else in the locker room.

As a physician, I was curious about these claims, and decided to research the medical literature. Reading papers in favor of early surgery, I realised their conclusions were not supported by actual numbers – but rather rested on biased interpretation of data. For instance, some parents considering surgery were told that the likelihood of gender dysphoria is the same for their children as for the general population, where around 0.6 percent of adults identify as trans.

In fact, the incidence in their children is more like 12 percent – 20 times higher! So there is a significant risk of subjecting children to cosmetic surgery to make them look more girl- or boy-like only to find when your child grows up that you guessed wrong. And since surgery removes tissue, it’s too late to reverse the surgery or undo the damage.

This surgery can have other grave consequences for many kids – pain, infertility, trauma and deep-seated psychological harm. Any infant surgery requiring general anesthesia should only be performed in life-threatening situations. A 2018 study featuring hundreds of thousands of kids showed there can be permanent neuro-cognitive damage in children who undergo anesthesia under the age three. Different-looking genitals are not an emergency, so  surgery can – and should – be delayed until children are old enough to avoid these harms and decide for themselves what changes, if any, they want.

In the decades when surgery became popular, doctors believed children couldn’t go through life looking different on the outside from how they feel inside, but we know better now. Although trans kids’ genitals are different from their gender identity, evidence shows that they don’t have any more mental health issues than other children when they have the support of their families. And since we wait with trans kids until their late teens before doing anything irreversible, why not delay surgery for intersex children?

Parents of intersex children need support to handle some issues – such as ignorance, stigma, bullying and questions about puberty – but those are social and psychological needs best addressed through education, community and therapy. Cosmetic surgery on a baby can’t prevent them.

Unfortunately, groups like the Societies for Pediatric Urology and the American Urological Association continue to endorse parental “choice” of early surgery. Even though there is no evidence that it helps, and plenty of evidence that it hurts, they tell families that technological improvements minimise these problems.

As a doctor, I understand how hard it is for them to accept the harm they’ve done, the pain they’ve caused, and how much they want to avoid this regret. But reconciling with our patients from the past means acknowledging when we have hurt people, even though we didn’t mean to, and moving forward by doing things differently based on what we have learned. That’s science, that’s medicine, that’s upholding our oath to first do no harm.

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