(Closed) Tay-Sachs Testing

posted 7 years ago in Pregnancy
Post # 3
5107 posts
Bee Keeper

@pmerr:  Tay Sachs is a horrible, horrible disease. If you or your husband can be tested for it, I would do it. Maybe just test your husband because if I remember right, you both need to be positive to have a baby with it. I wouldn’t do amnio for something like that unless you were considering termination because of it.

Post # 4
2853 posts
Sugar bee
  • Wedding: September 2012

You could ask for genetic testing of both you and your Darling Husband to see whether or not you are carriers for it. I have a friend whose baby was born with Tay Sachs and he died a very long, drawn-out, painful death before he hit the age of 2. They were tested after diagnosis and were both found to be carrying the gene, giving them basically 50/50 odds of it happening again. They split, she re-married. New DH went for testing and came back as a non-carrier, lowering their chances of having a Tay Sachs baby. They had a baby together who was a non-carrier, and then stopped having children because they didn’t want to push their luck and have another. So….I don’t know how you could ask your in-laws without giving away the secret, but you could bypass asking them by having your hubby tested to see if he carries the gene.

Post # 5
286 posts
Helper bee
  • Wedding: June 2013

Both parents have to come from Jewish heritage and test positive for the gene. It is a horrific disease though like chuck norris said. It wouldnt hurt to just have them check.

Post # 6
1423 posts
Bumble bee
  • Wedding: May 2009

You could just have your husband tested for the gene since he is the likelier of the two of you to be a carrier.  Both parents need to be carriers, so if he doesn’t carry it, you should be fine. 

Post # 7
252 posts
Helper bee
  • Wedding: June 2015

Children get Tay-Sachs only if they have two recessive copies of the gene. Getting a copy from your husband’s side would not affect the child if you don’t have a recessive copy to give.

Post # 8
492 posts
Helper bee
  • Wedding: July 2011

ETA on the stats thanks to link below…

For someone of 100% Eastern European Jewish (also known as Ashkenazi) background, I believe the risk is 1 in 27 of being a carrier for Tay-Sachs and around 1 in 4 of being a carrier for any of the 19 diseases now screened for in Jewish genetic testing.  For him being 1/4 Jewish, I think that makes him about a 1 in 100 risk of being a carrier for Tay-Sachs (or 1 in 16 if you add up chances of being a carrier for any of the other 18 less common diseases) – caveat that I am not a professional genetics counselor so I could be off here.  

Chances are your husband’s family may not know carrier status as this type of testing wasn’t around in our grandparent’s times, and your husband’s parents may not have been tested. Risk of being a Tay-Sachs carrier exists but is much much lower for most other groups (with French-Canadian as the other high risk group).  I am a carrier and it isn’t an issue as long as your spouse isn’t one.

With that said, I really like the suggestion to have just one of you tested…actually, maybe just you as chances are pretty unlikely for you to be a carrier, but higher for him. If you get a negative test, no need to test him…since there is a higher chance of him being a carrier, higher chance of gettting a positive result for one and needing to also test the second.  In the unlikely event that you are both carriers, it’s very important that you find out this information.

Post # 9
4464 posts
Honey bee
  • Wedding: February 2012

I doubt that you would be at risk for this, but you should definitely do genetic testing before getting pregnant. I don’t really see much hazard for this, and I think it wouldn’t hurt. My husband and I got genetic testing done before we got married. My coworker is married and just got it done and it turns out she’s a carrier for something, thankfully her husband isn’t so their future children are not at a risk! I don’t actually know if I’m a carrier at all because our testing center doesn’t tell you, they just let you know if you and your potential mate are a match or not. 

Post # 11
234 posts
Helper bee
  • Wedding: August 2011

the testing is a super easy test. My husband and I are both ashkenazi jews so once of us had to be tested – if one of us were carriers, then he wouldve been tested.  My dr uses a spit test – you spit in a tube, and she sends it out.  My insurance covered it for me.  I was a carrier for some other random Jew disease called Blooms Syndrome – so he had to get tested.  His testing cost $100.00  

Post # 13
11744 posts
Sugar Beekeeper
  • Wedding: November 1999

As long as you have no Jewish background, you’ll most likely be fine. Both parents generally have to be Jewish for Tay Sach’s to be present. 

Post # 14
10363 posts
Sugar Beekeeper
  • Wedding: September 2010

It is not impossible to get Tay-Sachs if both parent’s are not Jewish – just less likely. There is a whole host of diseases that are passed through the Jewish lineage – it’s worth getting the panel, IMO. My husband is Jewish, and I am of Norweigian heritage, so our future kids have a higher liklihood of getting cystic fibrosis. Almost 1/3 of Ashkenazi Jews are carriers for CF. Just one of the many diseases that a huge percentage of my husband’s cultural group carry.

Post # 15
887 posts
Busy bee
  • Wedding: June 2013

When genetic counsellors say “Ashkenazi Jew” they basically mean “all jews”. I’m not even sure why they make the distinction, as all jews (except for those descending from Spain and Portugal) can trace their heritage back to ashkenazi roots. So just because you’ve never heard the term ‘Ashkenazi’, or you don’t believe you have Eastern European relatives, does not mean that you are not at risk for carrying these diseases, if you have Jewish background. 


@MrsWBS:  You don’t have to have Jewish background, anybody could be a carrier for Tay Sachs, it’s just more prevalent in Jewish people. 

@crayfish:  Jewish people are actually slightly less likely than Caucasians to be carriers for cystic fibrosis – I believe the carrier rate for Caucasians is about 1/25 or 1/30.

@MrsPuddingface:  For Tay Sachs, or CF, or any of the other genetic diseases on the “Ashkenazi Jew panel”, they are what is known as autosomal recessive. This means that both parents have to have the gene for the disease in order for their children to inherit the disease, and there is a 25% chance, for each of their children, that they will be born with the disease. Not quite as high as 50, but still a high enough chance that I would want to know my (and my husband’s) carrier status. 

Let’s say big A is the gene for ‘not the disease’, little a is the gene for ‘disease’: 

Mom: Aa
Dad: Aa

Child:    25% chance it is AA     (not a carrier, no disease) 

            25% chance it is Aa    (carrier, but does not have disease)

another 25% chance it is Aa  (carrier, but does not have disease)

            25% chance it is aa (has the disease) 

It’s good to know your carrier status, so you can make an educated decision about whether to get further testing (amnio), either so you can be prepared for the possibility of having a child with a disease, or so you can choose to terminate the pregnancy. 

OP, your husband should get tested for the whole panel of Jewish genetic diseases, not just Tay-Sachs (if you want to know this information). Odds are your children will be fine, especially if you don’t have the same genetic background yourself, but it’s good to know. My husband and I each have a Jewish grandparent so we both got the whole panel of testing, as well as testing for CF. 

For anyone who wants to know this information but is facing prohibitive costs, and it isn’t covered by your health insurance, check out ’23andMe’. It’s a private company that offers genetic testing and it only costs $99 to get tested for pretty much everything that can even be tested for.

Post # 16
11744 posts
Sugar Beekeeper
  • Wedding: November 1999

@araneidae:  agree, which is why I said generally. I meant to add to my post but was running out of time, that French Canadians are also at higher risk.  I didn’t think they tested people of other backgrounds for it, because it’s much more rare though I could be wrong, I have no idea. 

The topic ‘Tay-Sachs Testing’ is closed to new replies.

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