Overcoming the Guilt of Passing a Faulty Gene to Children
A parent grapples with her daughter's gene-positive Huntington's status
In 2018, my wife, Jill, started showing classic signs of Huntington’s disease (HD) — including involuntary movements, called chorea — so she decided to go through with genetic testing. After she was declared gene-positive for HD, she shared the devastating news with our daughter, Alexus. The conversation we had as a family was heartbreaking.
Jill apologized to Alexus because she knew what that news meant for her.
After Jill’s diagnosis, Alexus took a genetic test and learned that she, too, is gene-positive. Once again, my family experienced an ocean of sadness and grief. Jill never blamed her father for passing the faulty gene on to her, but I know it weighs on Jill that Alexus has the same disease she watched her grandfather suffer from.
During a recent dinner with a friend we have recently gotten to know, Jill spoke about the guilt she feels because of Alexus’ diagnosis. Our friend told Jill that she shouldn’t feel that way.
Jill tried to explain her emotions more clearly.
“I don’t feel guilty in the sense that I feel responsible for giving HD to Alexus,” Jill said. “I feel guilty because I am her mother, and no mother wants her child to suffer.”
Our friend repeated that Jill shouldn’t feel that way because the disease is not her fault, and that she should channel that energy into something positive.
Jill agreed and shared how she’s doing that already. She helps me with my weekly column, is part of the Huntington’s Disease Society of America Advocacy Caucus, speaks at HD events, attends support groups to share the knowledge she gained taking care of her father, and is often asked by social workers to speak with people in the community who need advice.
Then Jill circled back to the emotion she feels. She said “guilty” isn’t the best word for it. She doesn’t feel guilty in the sense that she gave our daughter HD. She feels responsible that Alexus has firsthand experience with it. Alexus helped take care of her grandfather as his Huntington’s progressed physically and mentally, and she’s observed Jill begin to exhibit the same symptoms — all while knowing her own future will look the same if a cure isn’t found.
Guilt is a difficult emotion to deal with. Because Jill loves our daughter and wants to protect her, it’s normal for her to feel guilty in this situation. She simply wants to protect her daughter from witnessing and experiencing suffering.
As Jill grapples with this guilt, I know she will also do everything she can to love Alexus. In the end, that’s the only emotion that matters.
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, and are intended to spark discussion about issues pertaining to Huntington’s disease.
Thanks for sharing your thoughts. I'm in the same situation as Jill, having inherited the gene from my mother (but she was in the grey zone and never knew she was gene positive). I have been living as my mother, in the same grey zone (36) and never knew of Huntington's till my son showed the first signs (weight loss, chorea., equilibrium...) and was diagnosed at the age of 32, after about 10 years of errance. Unfortunately generous as a father I upgraded my 36 to his 48. Cedric died 10 years after the test at the age of 42.
Cedric was born in 69, we had no experience with HD, not even the name and at that time the gene has not been discovered...
Do I feel guilty ? Not really, since I could not know. However I cannot avoid to feel responsible.
And I understand Jill's mixed feeling...
Good luck friends !
I feel for you, as you've dealt with a lot of loss. And thank you for sharing how you felt. I am glad you haven't felt guilty, and we understand how you have not been able to feel responsible. Whatever happens, please take life one day at a time, and just try to do the best you can each day as you deal with so many different things on so many different levels. It can be overwhelming at times, so we hope you have a good support system in place. Take care.
I know I have said this before, but thanks again for your articles. I enjoy reading them and they are helpful to me as I could be getting ever closer to becoming a caregiver to a loved one with HD.
Thanks for being such a loyal reader and for your thoughtful words. We are glad that can be helpful. Take care.
Thank you for being so brave writing this article.
I've been struggling about testing since my teens, I'm 26 now. I cannot bring myself to take the genetic test and the fear of developing HD in the future paralizes me. I too saw my grandfather, uncle and mother pass after years of struggling with HD.
I'll keep you and your family in my prayers. I'm grateful to have found this website.
Thank you for reaching out with your story. Hopefully, sharing our struggles with HD will continue to help others feel less alone. Being tested is very much a personal choice and I am so sorry to hear how much you have to carry. HD is a scary thing to face and I hope you have someone to talk with about your very complex fears and emotions. If you or anyone in your family needs to speak with a professional, HDSA will pay for 8 sessions, over the course of a year, with an HD knowledgeable licensed social worker or psychologist. Click here to find out more.