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When You Feel Like You're Out of Options to Become a Parent Because of Your Rare Illness

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My husband and I had so many conversations about our future children. He wanted to name our hypothetical son Magnus, which I vehemently opposed. I wanted to take them to the river constantly so they would fall in love with the water and become oceanographers (and I could live vicariously through them). He would be the cool dad and I would be the enforcer of the rules. We bought a house walking distance to two ice cream shops so we could use our kids as an excuse to indulge constantly.

This all stopped when I tested gene positive for Huntington’s disease (HD). Along with the progressive decline of motor skills that eventually leads to dementia, it is genetic so there is a 50 percent chance any children we have would be positive too. This is just not an option for us. After being an active participant in my mother’s progression, I have chosen to not put my future child at risk. We discussed our options, but in the end realized none of them were truly options.

We could partake in the pre-implementation genetic screening process, but that costs tens of thousands of dollars and could still be unsuccessful. It also requires a whole lot of science and medicine, which isn’t how I envisioned my path to becoming a mother.

We could get pregnant naturally and have testing done during the second trimester. We would have to get an abortion if the test came back gene positive, but what if the time came and I couldn’t’ go through with the abortion? I am 100 percent pro-choice, but I really want to be a mother so who knows how I would feel in the situation? My husband is pretty firm on wanting to make sure our children would be born HD-free (understandably so) so what tension and problems would my potential wavering cause in our marriage?

We could adopt a child. But a major reason I want to have children is to participate in this unbelievable miracle where I can somehow grow an embryo into a full grown baby. And I want to have this unbelievable miracle with my husband and spend time joking about whose nose he or she has (hopefully mine, I have an adorable nose), so using another woman’s eggs is not an option either.

There are so many options to be the parents of healthy children, but none of them are options for us, causing me to feel island-less. There are the blessed, fertile, rare-disease-less couples who can get pregnant on their own terms. And then there are the couples struggling with devastating infertility issues. I belong in neither camp, which is incredibly lonely.

It becomes lonelier when people try to cheer us up. We hear “Oh, you could adopt” or “At least you could have children if you wanted to.” My least favorite attempt is when people try to remind me, “All women face the risk of having an unhealthy baby.” True, but the chances are rare…not 50 percent. I know people mean well, but it sucks to hear.

Huntington’s disease has taken away an amazing miracle millions of people get to experience on their own terms each year. And while I may sound like a spoiled brat, that’s not fair.

Originally published: September 26, 2016
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