It’s 2 a.m. in the maternity ward. The doctor uses words the parents have never heard before. “Ambiguous. Atypical. We’ll need to run more tests”.
Overnight, their excitement turns into confusion. Within days, they find themselves meeting specialists, hearing discussions about gender assignment, future wellbeing, and possible surgeries. Everything feels urgent, even when no one has explained what really needs to happen now and what could safely wait.
Years later, that same mother is an active member of an intersex parent support network. At a meeting, she shares what she wishes she had known from the beginning: “I wish someone had told me that we didn’t have to decide everything right away. I wish someone had told us that some choices could wait until our child was old enough to have a voice.”
Three Things Parents Wish They’d Known
1. You don’t have to decide right away.
Most intersex babies are healthy. Most can go home with their parents within days, just like any other newborn. The genuinely urgent medical concerns, such as salt-wasting crises in some forms of Congenital Adrenal Hyperplasia, are rare, distinct, and obvious to a competent medical team.
Almost everything else can wait. Cosmetic genital surgery, gonad removal, hormone treatments,..etc. These are decisions, and not emergencies at the time the baby is born. The American Academy of Pediatrics now supports waiting on optional procedures until a child can participate in the decision (ISNA Tips for Parents). The UN, Human Rights Watch, and many other intersex organizations support this approach
If a doctor tells you a non-urgent surgery has to happen now to prevent your child’s future emotional harm, you are allowed and encouraged to ask whether it can wait until the baby can decide for themselves.
2. Peer support beats Google.
The single most useful thing a parent of an intersex child can do in the first month is meet another parent who has lived with this for ten years. The most important advice for new parents is to find peer support by collaborating with intersex-led groups, because it is the only thing that can help reduce the panic-driven decisions that may lead to lifelong regret. Directly hearing another mother or father’s story about their intersex children does something no medical leaflet can do. For other family members, understand and support is key.
Peer networks exist. interACT runs one in North America. Intersex Asia connects organizations and parents across the region. Intersex-led groups in Nepal, Thailand, the Philippines, and beyond are increasingly able to match parents in their own languages for peer sharing and support.
3. Your child needs the truth — early and ongoing.
Many adults who learned about their intersex history accidentally through a misplaced medical file, a confusing puberty, an overheard conversation. They all describe a particular kind of confusion and sometimes betrayal that takes years to unwind, especially when some medical decisions were made by their parents without letting them know in the first place. The protective factor isn’t about keeping secrets. It’s about honest and age-appropriate sharing, starting young, and building over time.
Your child does not need a clinical lecture at age six. They need to grow up knowing their body has always been theirs, that it isn’t a secret, and that nothing about it is shameful.
Surgery Isn’t Always Wrong
It’s worth stating that this article is not anti-medicine. Some surgeries on intersex infants are genuinely necessary to address conditions that threaten their lives or long-term health.
The question isn’t about surgery vs. no surgery. It’s:
- Is this needed now for my child’s physical health?
- Or is this just cosmetic to make my child look “more typical,” like the social norm?
- Can it wait until my child can participate in the decision?
The growing global standard, endorsed by UN OHCHR, the Inter-American Commission on Human Rights, and the US Department of Health and Human Services, is consistent: delay non-urgent procedures until the child can consent.
A good doctor will welcome these questions and respect the decision of the family and the child.
The Takeaway
You are not failing your child by not deciding today. You are only failing them if you let panic make the call.
Slow down. Get peer support. Ask the questions. Tell your child the truth, age-appropriate and early. Your child will thank you for the time you took to make sure their body remained theirs to decide. Learn more about intersex children’s feelings here.
