My Genetic Status Complicated Having a Baby
As I walked down the street to get my afternoon coffee one day, it appeared as if everything was normal. Unfortunately, everything was not.
I crossed the same streets I normally do, walked past familiar neighborhood shops, and waved to fellow business owners. I ordered my usual coffee and said hello to the barista as she made my drink. Then I grabbed my latte from the counter and stepped back outside.
But I had recently tested positive for the gene that causes Huntington’s disease (HD), and I was still in shock. As I headed back to my flower shop, I wondered why people couldn’t see the gray cloud over my head. They must be able to tell that something’s wrong. Why isn’t anyone stopping to give me a hug?
Back at work, I found it hard to focus. My mind constantly wandered to thoughts about Huntington’s, which prompted yet another torrent of tears. Every time it happened, I’d hide out in the storage room, hoping that no customers would come in until I calmed myself down. I didn’t know how I would ever feel happy again.
In the middle of that turmoil, my husband and I had to make the most agonizing decision of our lives. Along with my diagnosis came the knowledge that any child we conceived would have a 50% chance of inheriting the disease from me. What would we do about having children?
I had dreamed of getting pregnant for years. I used to imagine standing next to my husband, with his left arm slung protectively across my shoulders pulling me close while his right hand rested on my protruding belly. Both of us wore broad smiles and were excited about the day our child would be born. I had lived my life in anticipation of being a mother, so the idea of not having children because of my genetic status was simply not an option.
If we felt comfortable with the risk, we could get pregnant naturally and hope our child didn’t inherit Huntington’s. When our baby was born, their status would be unknown. It would be their decision whether to go through with genetic testing when they reached the appropriate age.
When I thought about raising a child conceived naturally, I imagined a life filled with doubt, always wondering if I had passed the gene along to our child, and questioning whether we had made the right decision. I could only imagine the amount of guilt I would feel if my child tested positive for HD.
Another option was to get pregnant naturally and test the baby in-utero. If the baby tested positive for HD, we could have an abortion. Although I understood it was a viable option for some, I knew that once I was pregnant I would not be able to have an abortion. That was about the only thing I was sure of.
We could go through fertility treatment to have an HD-free baby. In vitro fertilization (IVF) with preimplantation genetic diagnosis (PGD) is a procedure in which the eggs are extracted from the woman’s body and fertilized with the man’s sperm in a lab. The resulting embryos would then be tested for HD, and only ones that were gene-negative would be used. The procedure costs tens of thousands of dollars and felt so extreme that we quickly decided that it was not for us.
Adopting a child was another option, but we weren’t ready to give up on having a biological child.
The excitement of starting our family was dampened by my diagnosis and the risk to our future children. It was difficult to figure out how to move forward, because no option was perfect.
It took us over five and a half years to have a child, because complicating matters further, we had unexplained infertility. During that time, we ended up trying several ways to have a baby, from natural pregnancy to IVF/PGD. None of them worked. We were ecstatic when we finally created our family through adoption.
Not everyone will make the same decisions as we did to have a family, and that is fine. If you are in a similar situation, you and your partner will make the choices that are right for you. If you change your mind along the way and decide to try something else, that’s OK, too. Life is complicated and things change.
I wish you all the best on your journey toward parenthood.
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Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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brigitte
People can "rationalise" whatever they desire. As a social worker for a state huntington's support organisation my role was to be supportive of a clients processes in the exploration of considering testing and /or sometimes about having children, including naturally even taking the potential risk of a child inheriting this. Hence I'd remain supportive of their notion that they'd had a good life so far and would rather have been born even if facing the disease much later on.Her mother had a very late onset that went tamely until loosing speech, some cognition, bed ridden, yet still ok with nutrition. It was the role of genetic counsellors to decide the level of facts the client desired or needed to know, not mine. Now retired I can state my honest views. Where a pregnancy is able to be planned, the parents duty is to protect their possible children from highly harmful cruel genetic risks. It ought to be PGD /IVF or don't have children biologically, if aborting a positive child is personally unacceptable (understandable for many). Adopt if you can. Or foster children while healthy, if at risk of an earlier onset. The onset of HD isn't that predictable and a child may inherit HD of an earlier onset and highly disruptive cognitive expressions as well as severe delibitating symptoms cutting life relatively early. Father's can even pass on juvenile HD, a real nightmare.When the option of a planned pregnancy exists research the variations of onset and presentations that can occur in families and ask direct questions from experts in the field. The stats say there is a 50% chance, yet numerous families end up with most kids inheriting this gene for HD. Because of unfair prejudice, shame and families being secretive about HD, not all persons at risk can often know the true extent and forms this disease had in prevalence or course of what they inherited. That's not to say if having the gene doesn't mean the best life possible may be created and with good support and good pactioners symptoms made more tolerable. Yet aside from the accidental pregnancy where one makes the best out it, it's quite unethical to expose any potential child to that risk you've no control over the extent of potential suffering. HD doesn't conform to "rationalisations'.