What can we do, as a society, to make sure this doesn't happen to anyone else?

Support orgs and individuals who advocate for better health care for persons with DSDs.

Support orgs and individuals who provide factual information and educational materials for prospective parents and the general public about the various DSD conditions so everyone becomes better acquainted with them.

Support better training about DSDs for medical professionals who work in fields like neonatology, pediatrics, internal medicine, endocrinology, urology and gynecology.

Support the universal adoption of the kind of newborn genetic testing that is already mandatory by law in every state and territory in the USA - and the inclusion, where appropriate, of specific DSD conditions to the list of what newborns are tested for.

The list of genetic anomalies and conditions that babies born in the US all must be tested for shortly after birth varies from state to state. But from the state screening programs I've examined, several forms of the specific condition that Volling has (CAH) are already routinely tested for in the US. Although medical care in the US has many problems, when it comes to mandatory newborn genetic screening, the US is a world leader. Even if you give birth at home in the US, it's impossible to register a birth and apply for a birth certificate unless a newborn has had blood drawn for the purpose of genetic testing.

Germany - the country where Volling is from - does mandatory newborn screening for a number of conditions, but it's not clear if any forms of CAH are included.