by Anonymous

August 16, 2022

I married into a family with Huntington’s Disease, a fatal, genetic disease that causes progressive degeneration of nerve cells in the brain. Physical, psychiatric and cognitive functions continually decline. Every child of a parent with HD has a 50% chance of inheriting the gene, and with the gene there is a 100% chance of developing the illness, unless one dies from something else first.

Within days of meeting my husband he took me to the VA Hospital to meet his father. He explained to me all that he knew, all that was known at the time, about HD, most pointedly his 50% chance of having the gene, the same odds for any baby we might make together. There was, at that time, no test, no cure and really no treatment besides sedation. If this was a deal-breaker, he wanted to know before our relationship developed any further. When I met his father, he was severely symptomatic and had been living in the VA for 8 years. He was heavily sedated to control the choreic movements that are the most visible symptom, and confined to a bed, unless assisted into a wheelchair. He could no longer speak in words. He would be hospitalized another 9 years until his death.

Naive perhaps but definitely in love, I said I could and I would handle this if it was to be his fate, our future. But having children was a terrifying prospect. At this time the gene for HD had not yet been identified, though research had confirmed that the gene resided on chromosome #4. We were lucky to live near one of very few universities active in HD research, with a community of doctors, patients, families and specialized genetic therapists. With this support we began a therapeutic process, eventually deciding that if my husband did get HD, we would want kids around to enliven our home.

The DNA of a 12-week-old fetus could be withdrawn via chorionic villi sample, and this would reveal from which of 4 grandparents chromosome 4 was inherited (provided there were DNA samples from other family members, which there were).

This small piece of writing is not where I will discuss the complicated ethics we were immersed in as a result of this particular fetal test, nor the agreements we were required to make with the university on how we would proceed when the results came back. Nor will I include a discussion of the emotional impacts of genetic disease on a family, the current generation or preceding and future ones; the destructive nature of silence, shame and secrecy; nor the immense power of denial. Nor the impacts of extended family relationships when any actions occur. Nor the complicated and difficult group therapy and support sessions involving others with symptoms or at risk for HD who believe it is divine intension and so be it if they birth more humans with HD. Suffice it to say, we stopped attending those sessions.

We were guided by the commitment to not bring another person into the world with a 50% chance of having a gene that gave them a 100% chance of developing HD. With 3 immediate family members at risk, my husband and his two siblings, we had agreed to eradicate the disease from future generations of our family.

I became pregnant. We were happy and anxious as any expectant parents should be of a planned and wanted pregnancy. And we were terrified. Twelve weeks is a long time to grow a fetus and wait. We were in very close communication with my OBGYN, my primary care physician, and the HD team at the university. The test was scheduled for a day that my doctor was not in the office, but she agreed to come in just for me, to perform an abortion should the test show that the #4 chromosome was inherited from my father-in-law. And it was.

I have always been thankful for that compassionate doctor. And for the person who told me, this is your first act of mothering, of protecting your child. Unless you have seen the suffering, the severe disabilities, the challenges of not being able to live independently, to speak, walk, read, eat or swallow, to shit; to be fed through a tube for years on end, unable to willfully move in any manner, you have no idea. Years of suffering on all fronts and premature death, commonly from asphyxiation, are fact with HD. For those related to the patient or at risk themselves, generational terror is lived, real, and is, in fact, severe trauma.

My father-in-law and 2 of his 3 children had the gene. They all exhibited HD symptoms in their early adulthoods, and possibly earlier. My husband’s two siblings died much younger than their father. We mourn them deeply. And we are secure in knowing none of the 4 children born from these three siblings carry the HD gene, and cannot pass it on. HD has been eradicated from our family after causing immeasurable pain and damage. The cost to staunch further destruction was two abortions. One of those was mine.

Remember that our stories are ours to tell. We’d love to hear your story too!