Twin pregnancy with a 1 in 4 genetic risk - to continue or terminate

[MyPeachCrow]

7 weeks pregnant (unexpected) and with twins! 1 of our children has an extremely rare genetic condition that affects his vision - and from 30years onwards his health will start to deteriorate. Its a serious condition, not one that we would wish on any future children.

Anyway...the chance of either/both babies having this condition is 1 in 4. We cant get test results back until im 14 or 20 weeks pregnant.

My question is has anyone been in a similar situation - pregnant with a child with a potential genetic condition - what did you do? How do you feel about your choice now? Thank you x

How do you feel about being pregnant? Do you want 2 more children?

Personally, I'd get the genetic test and make a decision from there. Are the twins identical or not?

It would be hard but we would manage and our family would be complete-

But ...we would not want to bring another child into the world with the same genetic condition. 14 or 20 weeks feels too far on to ve terminating if we had to :( l wondered if anyone else had been in the same position qnd made the call at this point x

Could future medicine change things?

Are they identical?

If not would you have a selective termination, if one had it?

You have no judgement at all from me, I am just trying to think of things I would want to think about.

I have had a TFMR, we waited for the results so I knew, I don't know if I could have done it on a what if.

Thank you...we cant find out if the twins are identical or non identical until 12 weeks - if theyre identical we can have the genetics test done then and get the results at 14 weeks, if theyre non identical its a different test and we wont get the results until 20 weeks.

We would terminate if they had the genetic disorder...but I dont think I would be able to proceed that far on..it would feel too much like our babies if that makes sense?

How far on were you when you got the results/terminated?

Its a very personal decision. I think its one thats impossible to make without being fully informed. You need all the information before deciding. Is there any testing they can do before 14 weeks?

My daughter had 1 in 2 chance of having a genetic condition from her dad (he had a mosaic form so only had some of the associated issues but she would have it fully) I had cvs done I think at 12ish weeks and the results were sent to Manchester genetics and took about 2 weeks to come back. I knew I would terminate if she had the condition and it was an awful wait but fortunately she did not have the condition and is a happy healthy 6 year old now. It is such a tricky decision for you. Had you not fallen pregnant now would you have planned for more children in the future?

It really is isnt it :( and im glad your daughter did not have the condition. We wouldnt be actively planning for any, but would also be happy to have these 2 if it werent for the genetic condition. We had the same with our younger son - thankfully found out at 14 weeks that he did not have the condition but I remember at the time how hard it would have been to go through with the termination. Unfortunately they can only test at 12 weeks if the twins are identical (which i think is a 1 in 4 chance) otherwise we are waiting until 20 weeks for the results if they are non identical which would be way too far on for us to terminate. It just feels so risky :(

Only if they are identical twins (which i think is a 1 in 4 chance) - and we would have those results at 14 weeks. If they are non identical we wouldn't get the results until 20weeks minimum and that feels too late to go through termination :(. The genetics team cannot improve on the timescales

Those odds sounds a bit strange. If each child has a 1 in 4 chance and they are not identical the chances are that both will not have the condition and at 20 weeks you probably could not terminate one pregnancy and keep the other. I make that a 1 in 20 chance both will be affected, 4 in 20 or 1 in 5 just one is affected and 15 in 20 so 3 in 5 neither are affected.

Without knowing the condition we cant know how much the child(ren) might suffer but I think I might abort now with those odds.

I assume from the fact that you’ve chosen to get pregnant again, having already been through this with your younger son, that deep down you’ve already made the decision that you would keep the babies. Go with your gut!

I would do the same - you can get a termination at 14 or 20 weeks although it is obviously likely to be more traumatic than one at 7 weeks.

If you want more children, I would wait.

If you don’t want more children regardless of the condition, then it’s okay to terminate

Unless you took steps to ensure your dc was an only dc you were always going to risk being in this position.
Have the testing done at 12 weeks first. That may be the only wait there is..