What do you do: your baby is going to have Huntington's disease

You are a carrier for Huntington’s disease. You will not develop the disease but could pass it on to your children (50% chance each child). Well, you are (or your wife is) pregnant, and doing your due diligence, the prenatal testing shows that the fetus has a high enough mutated allele count that it will definitely someday develop the disease.

It’s still early enough that an abortion is a viable option.

On the one hand, it’s a horrible, slowly-developing, incurable degenerative neurological disease.

On the other hand, in most cases, the disease does not manifest until well into middle age, so a full, happy life up until at least that point is more than possible.

What do you do?

a) have the baby.

b) terminate the pregnancy and try again.

c) terminate the pregnancy and never try again.

This: [d) ideally, I would not attempt to have children at all.] was going to be an option, but in the given scenario, it’s too late for that.

Terminate and try again, for this reason:

By passing it on, even if symptoms for that child won’t appear until middle age, it will be earlier for their children etc. Break the cycle.

Many parents decide in advance that they will terminate a pregnancy with a chromosomal disorder.

Huntington’s is an autosomal dominant trait. There are not carriers.

Fair enough. Thanks for setting me straight on that (oops).

Ignore that part. You will have the disease. The rest remains the same.

I would have the baby and use assisted reprodutive technologies with pre-implantation genetic testing for future children.

Abortion. I wouldn’t wish any dementia on my children, and Huntington’s is a particularly nasty one.

Though, realistically, I’d probably just get a vasectomy if I know I’d be passing on these genes to any future children. Simplest, cheapest, safest option.

I wouldn’t abort the child, however, I would make different decisions in regards to how I encourage that child to get an education and experience life. Obviously, if a trip to Europe is a life goal in there somewhere it would be better to do it early than putting it off to a retirement that isn’t going to happen. There will need to be long-term care planning. But while Huntington’s is horrible that doesn’t mean the life prior to onset isn’t worthwhile or enjoyable. And at some point I’d have to tell the kid, of course.

Subsequent pregnancies I’d opt for pre-implantation testing if possible/practical to eliminate another child being born with the disorder. However, if the lab screwed up and it turned out an embryo with the disease was started cooking I wouldn’t abort. I’d probably sue the lab, but the situation would essentially be the same as for the first child.

Have the baby.

It depends how hard it was to get pregnant in the first place. If that was fairly easy for us, then I’d abort and try again. If it was hard for us, I’d keep the baby.

If I wanted kids pretty badly, I wouldn’t abort and stop trying. Not after the first one. Maybe after number 3, I would start considering adoption instead.

It’s sad to say but I am stuck in an impossible situation. I chose to get pregnant and abort if the fetus has HD. Her repeats are 44. She has it but I don’t want to abort. I feel so connected to her already and I wonder if I might be overreacting to this because of how hard knowing I have HD has been. I’m 34 y/o and asymptomatic.

We all have to die from something. Is Huntington’s Disease so much worse than all the other options?

Is longevity the most important life goal?

Is it wrong not to end this disease?

If knowledge is power why do I feel so weak?

Any insights and thoughts are appreciated.


This is a zombie thread, BTW.

The Huntington’s Disease Society could help you.


Which side of the family did the disease come from?

Never trying again would be the punishment I’d give myself for terminating the pregnancy.

The thing is, if one of your parents has the disease, and you care enough to get yourself tested, you’ve probably already considered options such as PGD and would be unlikely to find yourself in this position.

If, OTOH, you’re one of those people who’d rather not know, then this isn’t even an issue.

Firstly, thanks for joining the board, and secondly, I cannot begin to imagine the turmoil you’re going through.

As you said, we all have to die from SOMETHING, and I’d posit that a good life cut short by an inheritable disease is better than no life at all.

Life is tenuous. We just don’t know one day or hour to the next when our ‘time’ will run out.

I would add that if I was pregnant with a child who was going to suffer constant pain and serious disability, I would CERTAINLY save that child the suffering by having a termination. That’s a no brainer. But to have a child who might develop problems in later life, and who knows what medical advances might be made by then…hmmm.

Shit, I would hate to be in your shoes…but whatever decision you make, I hope you can live with it comfortably. Me? I wouldn’t have a freakin’ clue what to do! :frowning:

Not necessarily, I know people who decided to test for certain things (Down’s mainly) so that if they happened they’d be better prepared.

It’s a tough spot to be in, for sure.

On the one hand, it’s a long, slow, horrific death.

On the other hand, onset of the disease will generally not occur until well past middle age, and in many cases something else kills you before you even reach the diagnostic stage.

In my own particular situation, it’s my wife and her paternal family who are the directly affected parties. My father-in-law was in his late 60s when diagnosed. His siblings have not shown any symptoms, and it was unknown in previous generations (they likely either went undiagnosed or passed away before becoming symptomatic). My brother-in-law tested positive and my wife will not get tested, but my wife and I decided not to have children (we were leaning that way already so the potential HD made it an easy decision).

Brooklyn112, I sympathize and wish you luck. I wish I had an easy answer for you, but I’m afraid all I can offer in the way of advice is to learn as much as you possibly can. There are support groups and counsellors available in most major cities and peppered liberally across the country (assuming you’re in the USA).

I will advise that you seriously look into long-term care insurance if you can afford it, for yourself and for your child should you choose to complete the pregnancy. And even though the ACA currently protects you now where you would previously have been subject to outright automatic denial of coverage, there are still serious health insurance implications, so be very careful who you discuss this with.

This sounds like an anti-abortion question. “Congratulations. You just killed Arlo Guthrie.”

I’d have the baby and take my chances.

How far along are you? If it’s second trimester, I’d probably have the baby but never try again. If it were first trimester I might abort.

But there’s a lot of time for joy before Huntington’s emerges. Hard question. Best wishes whatever you decide to do.

I’m so sorry for what you’re going through.

On a quick Google, 44 repeats isn’t terrible - it doesn’t point towards a very early onset.

I can only tell you what I’d do, which is have the baby. There are no guarantees for anyone. A perfectly healthy person can die at any age in a car accident, or of leukemia, or of a million causes that aren’t predictable.

If this were a disease that offered her no chance at any amount of healthy, happy life, I would end the pregnancy. But she could have 40, 50, 60 years of totally normal life. That’s far from worthless.

I picked the third option. I don’t see any particular need to have a baby, especially given the risk. Other people can have babies, and I don’t want my children to see me go through that when it hits me. Not having children is not a tragedy.