Never did dor yeshorim. Do it now??

shabbatiscoming

Thu, Feb 01 2018, 6:00 pm

amother wrote:

Which rabbanim are knowledgeable about this and are sensitive, caring?

Machon Puah does exactly this, they deal with the infertility side of things as well as the religious side of things. And they have, at least in israel I know for sure, rabbanim of all walks of frum judaim.

happyone

Thu, Feb 01 2018, 6:22 pm

My recommendation would be to go with Jscreen. Please check them out at jscreen.org. They test for over 200 diseases. It's simple to test with saliva samples and costs just $150.00. Their testing is way more comprehensive than Dor yesharim and includes many newly identified genes. Once you have more information you can make informed decisions and if necessary consult with competent rabbanim and geneticists.

dancingqueen

Thu, Feb 01 2018, 6:29 pm

I’m surprised your obgyn never brought up doing the ashkenazi genetic screening until now. Mine bring it up every pregnancy.

amother

Gold

Thu, Feb 01 2018, 8:38 pm

dancingqueen wrote:

I’m surprised your obgyn never brought up doing the ashkenazi genetic screening until now. Mine bring it up every pregnancy.

Mine never mentioned anything.
Genetic counselor actually mentioned it to me today, so I'm going to call obgyn's office tomorrow and ask whether it has ever been done.

amother

Gold

Thu, Feb 01 2018, 8:40 pm

happyone wrote:

Thank you for recommendation. I've checked it out, looks interesting. Incidentally, they check for genes associated with hearing loss. I just need to verify what exact variety of one gene, maybe this is something we can use.

And seek daas Torah too...
Any leads?

amother

Jetblack

Thu, Feb 01 2018, 9:58 pm

Dor yeshorim does not do testing on people in committed relationships.

amother

Wine

Thu, Feb 01 2018, 10:10 pm

amother wrote:

I also second jscreen. I did it with them recently and they were so nice. The counselor called me up and explained everything to me. They tested for over 300 things. People are typically carriers for a few stuff so don't freak out; it's usually only an issue if both parents are carriers.

Some things are not terrible, for example, I'm a carrier for something which could cause excessive bleeding, but it's not an issue unless such a person is having surgery, and even then, it can be dealt with. Now DH has to get tested.

amother

Cobalt

Fri, Feb 02 2018, 5:02 pm

OP, I'd love to be in contact with you going forward as we are in very similar situations. Maybe after Shabbos we can figure out a way to PM without outing ourselves

amother

Powderblue

Sat, Feb 03 2018, 3:42 pm

I always strongly recommend doing genetic testing.

Although you say the idea of finding out you're carriers and having to deal with the ramifications of that would be a hassle, I guarantee it's a million times less of a hassle than having a child with a genetic disorder.

I have lots to say on this topic both as:
1) I am scientist in the field of genetics - I did the all the coursework to be a genetic counselor, but work in research instead. (Disclaimer, I am NOT qualified to dispense medical advice).
2) I have a child with a rare genetic disorder (it's so rare, they don't know the gene for it. But I don't for a minute regret doing genetic testing, because I have as much information as I can get and at least know we aren't at risk for other genetic disorders).

I worked in genetics long before I had my own child with a genetic disorder (funny how things work out). I already had strong opinions on the matter before having a child with a genetic disorder.

I'll keep it brief:
- Dor Yesharim won't test married couples. JScreen is a great option - they have comprehensive testing, I recommend you talk to them. They don't just test of rhte Jewish disorders, they test for many things. This is especially important if you are looking at hearing loss, as there are several genes / disorders that could be the culprit (or none).
- Just because you find out you are carriers, that doesn't mean you have to do PGD. Especially for something like hearing loss, which is not life-threatening and does not cause immeasurable pain ans suffering, it would be up to you to decide whether to do it or not. But at least you would know what kind of thing you are up against. Some types of hearing loss are parts of larger syndromes which can cause other health problems (for example, some types of hearing loss are associated with significant kidney problems). Knowing what you're carrying would allow you to make an informed decision for your future childrens' health, and decide whether to go forward with PGD.
- You could have many healthy children so far and be carriers for a terrible disorder chas v'shalom (think tay sachs or another dozen diseases), and just not have had any sick children so far. And you could prevent immeasurable suffering for yourselves and your future children.
- I don't see a reason why you would need to ask daas torah about doing the genetic testing, though if that's the norm in your community, that's a different story. I would consult with daas torah once you know if/what you are carriers for if you need help deciding on how to proceed. I do recommend talking to Machon Puah - either on of their rabbis can help you directly or refer you to other helpful rabbis.

Wishing you much health!