Huntington's Disease - Telling Your Partner & Having Children HD Free - Tony's Story

Thank you for sharing your journey. Congratulations on the birth of your HD free twins! I am happy that IVF worked for you and your wife. As the wife of an HD positive 34 year old, we have decided not to have children. Each of our journeys are so different and I hate that HD has this hold on us, but at least with your family and ours, HD stops with us.

Bless you, Tony..you did the right thing..my son married a woman who never told him about the HD..we found out the week they married..my son wanted children so they did their research and had donor egg IVF and she had twins..she was symptomatic during the pregnancy..I had to move in with them and care for the infants and stayed until she passed 6 yrs later..it affected both my grandkids...they were terrified of her!..by age 5 they were worried they would catch it..they do not know she is not their 'birth' mother of course and wouldn't undestand anyway..Good luck to you..

So interesting. Perplexing that the chances are 50/50 and yet so many positives with the embryos, and with people in general during testing. Congratulations on the twins… and for having the courage to stay on the path.

Great story! Congratulations Mom and Dad!! xxxooo

The other consideration based on my niece having had twin girls via IVP/PGD is the expected age of onset of HD for the parent who is gene positive. In her case she began to be symptomatic within a few years of their birth. They are now 9 years old and she has progressed rapidly. She is now living in Assisted Living. It has been very difficult on the children to have a mother so ill when they were so young. And, the other parent ha to be prepared to not only be the breadwinner and the caregiver, but also a single parent. It's a lot! That said it doesn't mean and HD positive adult should not have children. Just think hard about what the other parent's and the children's experiences will be like as HD takes hold.

Juvenile Huntington's is why my husband and I never had children. He had HD and has now passed away. If we had had children it would have been like flipping a quarter betting on the very life of our unborn children‐‐like flipping a quarter because there's a 50% chance for each child born of him or her inheriting the gene & getting the disease when a parent has the gene. In our case, we considered adoption but thought it was too much to put a child who has already likely been through some type of traumatic circumstances. We even thought about having in vitro fertilization from one of his brothers IF they did not have the gene, but then I thought I didn't get married to my husband so I could have somebody else's baby. [As it turned out ALL FOUR of his brothers DID HAVE the gene so IVF wouldn't have been an option.] We were fortunate to have had the choice to make as far as what to do about having children or not having children. By the time it was discovered that their mother had had Huntington's disease, many of his brothers and sisters had already had children so they never had the chance to make an informed decision on whether to have children, not knowing that they themselves carried the gene. SO FAR, I have two nephews who have the disease; yes, the SEQUEL. There is no possible way I can even communicate what a hellish nightmare it is that this disease is continuing on in this family who has already lost so much--7 out of 7 siblings in my husband's family including my husband have ALL now passed from this disease). In addition to the two nephews who have been diagnosed with HD, I have 3 more nephews and two nieces who are at risk for developing the disease.

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Why IVF? Wouldn’t just artificial insemination be easier?