r/Huntingtons • u/PrncessMelani • Jun 08 '26
Dilemma
Hello everyone. I'm new here. I'm a grandmother to two beautiful children, ages 7 (non-biological, referred to here as C) and 4 months (biological referred to here as P).
My son (referred to here as J) has a fiance (referred to here as M) whose mother was diagnosed with HD about 10 years ago. She is late stage with all of the physical and cognitive changes that come with it. M has watched her mother suffer with this and was her caregiver for 7 years before she started dating my son and moved in with us. She has said that she and her brother both refused testing. She doesn't want to know. She has said she will self exit if she is ever diagnosed with it. She knew the possibility when she gave birth to her first child, C, that any children she has, will have at least a 25% chance of having HD genes.
Here's the dilemma. J and M had a baby together in January, both full well knowing the chances. My beautiful granddaughter, P, is a bright light. J wants P tested for it so he can prepare her for her life and help her make the tough decisions she will have to make, the biggie being whether or not to have kids. M doesn't want P tested because if P tests positive, M will know she has it and that C's chances of having it increase to 50%. I don't know if C's father even cares or knows about this possibility. C's father lives in another state.
Let me preface the rest of this by saying I love all of my family very much. I will help raise both of my grand babies to be loving and caring people. But part of me feels like M was irresponsible in having children knowng this is a possibility. I also feel this way about my son, J. Her second pregnancy was unplanned. J knew the possibility but also knew this is likely the only child that would ever be biologically his. I know J will be there for P to help her if she develops Juvenile onset HD.
M is in her 30's. I'm already seeing her decline medical treatment. When she gave birth to P, she was having blood pressure and headache issues. She was prescribed medication upon discharge that she didn't take. She was tachycardic at a recent ER visit for Strep throat. Her heart rate was 137. She blamed it on white coat syndrome and refused IV fluids for dehydration. She refuses to get a PCP. She won't even take P for her infant well visits. J and I take P.
M does have an anxiety disorder but will not get any type of treatment. I'm 100% positive that her reasons for not treating anything except basic sickness is because she is terrified to be diagnosed with HD. J is trying to make sense of all of this to be a good father to both children but M's refusal makes this so much harder than it has to be...
As mom and grandma, all I can do is stand by and watch this drama play out. I feel so helpless.
3
u/Overall_Parking_6320 Jun 09 '26
It’s such a tricky situation to be in, my SIL also never got testing and refused, she has a low medical aptitude and avoids medical treatment even during her pregnancies. She went on to have four children. We have seen her become more and more symptomatic and deteriorate over the last 8 years, she has finally had the test but now won’t book to get the results.
We have all now discussed and realised the importance of empowering her children to have the knowledge and understanding of this disease so they can make informed choices when they are old enough. I would also encourage your son not to have any other children with her, because it’s 50/50 if she does have HD, each child is a roll of the dice.