I just joined the site today and love it already. Looking for some friends who also have chromosome translocations and have done/are in the process of IVF/PGD and can help give some support/answer questions as we go through this daunting process.

Also wanted to talk about help/questions to ask to get insurance coverage with IVF- particularly through MA insurance policies.
Thanks so much!

Hey Em, My DH and I have just suffered our 8th natural miscarriage and have decided to try IVF w/PGD around August/September. MyDH has a Reciprical Balanced Translocation of 14 & 15, what is your Translocation?

Would love to travel this journey with you for support and answers..

Hello.

Im not going through IVF/PGD but i do have a balanced translocation of 22-2. I was on the waiting list for PGD untill i would be old enough for the NHS.
Due to personal reasons i removed myself from the list.
I now have a 4 month old daughter who was conceived naturally and she doesnt carry the translocation or any chromosome defect at all

Tracie- little isabella is adorable and a little miracle!

Miss Red~ Im sorry to hear about your trouble concieving naturally I have a translocation between the 5 and 18 chromosomes. We are looking into insurance coverage right now but are hoping to start the process in Oct/Nov.

We have talked to 2 genetic counselors about the process of IVF/PGD. They have told me the whole process usually takes about 2 months from the start of the hormone shots to the time you know if your pregnant? Im sure it varies but is that similiar to what you have found?

Im excited to have found someone in a similiar situation as me! Thanks for responding

Tracie- what is NHS? Im glad it worked for you your daughter is very cute

the healthcare service in the uk.

Hi, Em!

I have a Roberstonian translocation (13, 22) which we suspect was behind my two MCs (6w and 9w). I have just done my first cycle of IVF/PGD in NYC, we transferred two balanced embryos and had an additional two balanced embryos to freeze, so we are quite happy with that result for a first cycle! My test date is next Thursday, so TBD if this worked, but I am happy we tried it regardless of the outcome.

The process was really pretty quick...we found out about the translocation in late January as part of our clinic's standard infertility workup/genetic testing. In early February we sent chromosome stamples off so they could build our PGD probes, which came back in about 6 weeks. We then started the IVF stims (I took birth control for a month while waitng for the probes, then started straight onto stims when my period came), had retreiveal on the 5th, they biopsied 14 embryos on the 7th, and on the 9th we found out they had several balanced ones for us.

My insurance covered the IVF part, and covered PGD for my translocation chromosomes, but would not cover screening of any additonal chromosomes (aneuploidy screening), so we paid for that out of pocket. We are glad that we did, as in the 7 abnormal embryos most of the abnormalities were with other chromosomes, not just 13 and 22. Apparenly having a translocation can cause chaos with all the chromosmes, so more general screening is something to think about.

That is a long post, sorry! Just thought I'd try to answer some questions you might have. There is also an amazing yahoo groups message board with over 1,000 women (and some men) dealing with translocations. Just look up "Balanced Translocation yahoo" and you'll find it, the board name is "Balanced Translocation Support Group". You have to join to see the posts, but it is really a supportive and knowledgable group. I found I learned more there than I did from my GC on several occasions!

x Emma

Emma-
Thanks so much for all the info! It sounds like things went smoothly for you the first round, good luck next thursday- i hope it works our for you- youll have to keep us posted!

I will for sure look up that group on yahoo- i didnt even think to look there.

Thanks again