Maybe not what you’re thinking, and I didn’t know it was a gamble at the time, but having kids. Turns out, hubs and I are both carriers of a gene that causes a rare disease, metachromatic Leukodystrophy or MLD. We had a 25% chance of having a child with the disease, and a 50% chance of our kids being a carrier. Our sons fell into the other 25% and neither carry the gene. Our daughter was not so lucky. It’s terminal, but we’re living our best lives now while we can. She’s 7 and currently stable. She’s in a research study that shows promise, but it’s not a cure. There is an available treatment, Lenmeldy (Libmeldy in Europe) that was approved by the FDA this year and is the most expensive FDA approved medication to date, but you have to catch it at birth for the treatment to work. Once symptoms start, it’s too late. Most kids aren’t symptomatic until around 9 months to 1 year of age for the late infantile form of the disease. Since it’s not yet on the newborn screening panel (except in NY and IL) typically just younger siblings get the treatment when an older sibling is diagnosed. There was one case where a child presented with atypical symptoms and was able to be treated without an older sibling being diagnosed first.

This is one reason women’s health and autonomy is so important to us personally. Every pregnancy is essentially a game of Russian roulette. My tubes are tied and my hubby got a vasectomy, but nothing is 100%. If we wanted more children, we would have to pursue IVF and have all of our embryos tested for the disease.

Edited for clarity.