OMG I just found out I have a balanced translocation (??) of chromosome 10

[MrsEshaw]

My hubby has a balanced translocation of the 13/14 chromasones. We have had a few mc's and we have a healthy 3 year old. Im now 8 weeks preg and awaiting cvs testing with this one at 11-13 weeks. For us the chance of patau syndrome is 25%, a carrier 50% and a child with neither is 25%, my daughter was in the 25% and is not a carrier and has healthy chromasones. It took us 2 years to get pregnant the 1st time, to loose it at 13 weeks, we didnt have the baby tested to see if it died of this as if it didnt we would have been paranoid that the next one would have it. I think you can have some sort of ivf but for us this wasnt an option becos of the finantial situation so we have just tried to get preg and if i mc then it most prob was poorley. We are lucky to have out daughter so know we are ok getting preg and carrying to term, its just that first bit upto the cvs test. If you want o chat etc private message me. x

Thanks for all that info. I'm just starting to read about all this today. Still kind of in shock. We'll have to see what the genetics person says to do, but if there's no risk of carrying a screwy embryo to term, I think we might also try the route of just to keep trying until a good one sticks. We certainly can't afford IVF either. My insurance doesn't cover it, but apparently I can get a supplemental insurance in Massachusetts that will cover it. I'd rather not go down that route, if we can help it though.
Thanks

Hibiscus,
In Massachusetts the law requires your insurance to have infertility coverage, this includes IVF and PGD!!! I beleive MA is the only state that has state mandated infertility coverage.
I have a balanced trans too, and it's ALL covered.

 

[hibiscus07]

My hubby has a balanced translocation of the 13/14 chromasones. We have had a few mc's and we have a healthy 3 year old. Im now 8 weeks preg and awaiting cvs testing with this one at 11-13 weeks. For us the chance of patau syndrome is 25%, a carrier 50% and a child with neither is 25%, my daughter was in the 25% and is not a carrier and has healthy chromasones. It took us 2 years to get pregnant the 1st time, to loose it at 13 weeks, we didnt have the baby tested to see if it died of this as if it didnt we would have been paranoid that the next one would have it. I think you can have some sort of ivf but for us this wasnt an option becos of the finantial situation so we have just tried to get preg and if i mc then it most prob was poorley. We are lucky to have out daughter so know we are ok getting preg and carrying to term, its just that first bit upto the cvs test. If you want o chat etc private message me. x

Thanks for all that info. I'm just starting to read about all this today. Still kind of in shock. We'll have to see what the genetics person says to do, but if there's no risk of carrying a screwy embryo to term, I think we might also try the route of just to keep trying until a good one sticks. We certainly can't afford IVF either. My insurance doesn't cover it, but apparently I can get a supplemental insurance in Massachusetts that will cover it. I'd rather not go down that route, if we can help it though.
Thanks

Hibiscus,
In Massachusetts the law requires your insurance to have infertility coverage, this includes IVF and PGD!!! I beleive MA is the only state that has state mandated infertility coverage.
I have a balanced trans too, and it's ALL covered.

I know and here's the catch for me. My company is based in Virginia so I have their group insurance! Ugh! My OB/GYN told me that I could buy BCBS coverage in MA temporarily, just to get coverage for IVF, if needed but that would be about $600 a month. It's still probably much cheaper than the IVF out of pocket.

Have you done IVF yet? Any luck with PGD?
We have our genetics counseling appt 10/5 at Beth Israel and I'm not sure what to expect. Hopefully, they tell us that we can still potentially conceive naturally. We shall see...

 

[MrsEshaw]

I have a balanced trans too 13/10. Mine is technically a deletion/insertion. Part of my 13th chrom is missing a segment, and that segment is inserted on to my 10th chromosome.

We found out about this when my 4 month old son was diagnosed with cancer. He has retinoblastoma in both his eyes. They did a karyotype on him to find out what was going on, and turns out the little guy is missing part of his 13th chromosome, thanks to me. He has an unbalanced translocation (13q deletion syndrome).

So then my husband and I were tested and that's how we learned about my balanced translocation.

Needless to say, we'll be going IVF with PGD as soon as the little guy is done breastfeeding. We love our little guy so much and don't want to have another child suffer like he has. He had chemo and radiation all before his first birthday. Noah is doing well now!

 

[MrsEshaw]

Can you get on your husbands insurance? You could look into getting MassHealth. Perhaps it would be cheaper than BCBS. But, $600 a month is not bad considering IVF could cost tens of thousands.

We have completed all of the preliminary stuff for IVF (at Brigham), we're ready to begin the injections as soon as I can get Noah weaned. The problem is that he won't give it up! He's 16 months old now...so it's TIME!
I just turned 28, so I do have time on my side and am thankful for that. But, my reproductive endocrinologist said that it could take a long time until I become pregnant (with a healthy balanced embro)...as is the case with female translocation carriers.

 

[MrsEshaw]

Can you get on your husbands insurance? You could look into getting MassHealth. Perhaps it would be cheaper than BCBS. But, $600 a month is not bad considering IVF could cost tens of thousands.

We have completed all of the preliminary stuff for IVF (at Brigham), we're ready to begin the injections as soon as I can get Noah weaned. The problem is that he won't give it up! He's 16 months old now...so it's TIME!
I just turned 28, so I do have time on my side and am thankful for that. But, my reproductive endocrinologist said that it could take a long time until I become pregnant (with a healthy balanced embro)...as is the case with female translocation carriers.

 

[MrsEshaw]

My hubby has a balanced translocation of the 13/14 chromasones. We have had a few mc's and we have a healthy 3 year old. Im now 8 weeks preg and awaiting cvs testing with this one at 11-13 weeks. For us the chance of patau syndrome is 25%, a carrier 50% and a child with neither is 25%, my daughter was in the 25% and is not a carrier and has healthy chromasones. It took us 2 years to get pregnant the 1st time, to loose it at 13 weeks, we didnt have the baby tested to see if it died of this as if it didnt we would have been paranoid that the next one would have it. I think you can have some sort of ivf but for us this wasnt an option becos of the finantial situation so we have just tried to get preg and if i mc then it most prob was poorley. We are lucky to have out daughter so know we are ok getting preg and carrying to term, its just that first bit upto the cvs test. If you want o chat etc private message me. x

Thanks for all that info. I'm just starting to read about all this today. Still kind of in shock. We'll have to see what the genetics person says to do, but if there's no risk of carrying a screwy embryo to term, I think we might also try the route of just to keep trying until a good one sticks. We certainly can't afford IVF either. My insurance doesn't cover it, but apparently I can get a supplemental insurance in Massachusetts that will cover it. I'd rather not go down that route, if we can help it though.
Thanks

Hibiscus,
In Massachusetts the law requires your insurance to have infertility coverage, this includes IVF and PGD!!! I beleive MA is the only state that has state mandated infertility coverage.
I have a balanced trans too, and it's ALL covered.

I know and here's the catch for me. My company is based in Virginia so I have their group insurance! Ugh! My OB/GYN told me that I could buy BCBS coverage in MA temporarily, just to get coverage for IVF, if needed but that would be about $600 a month. It's still probably much cheaper than the IVF out of pocket.

Have you done IVF yet? Any luck with PGD?
We have our genetics counseling appt 10/5 at Beth Israel and I'm not sure what to expect. Hopefully, they tell us that we can still potentially conceive naturally. We shall see...

Can you get on your husbands insurance? You could look into getting MassHealth. Perhaps it would be cheaper than BCBS. But, $600 a month is not bad considering IVF could cost tens of thousands.

We have completed all of the preliminary stuff for IVF (at Brigham), we're ready to begin the injections as soon as I can get Noah weaned. The problem is that he won't give it up! He's 16 months old now...so it's TIME!
I just turned 28, so I do have time on my side and am thankful for that. But, my reproductive endocrinologist said that it could take a long time until I become pregnant (with a healthy balanced embro)...as is the case with female translocation carriers.

 

[MrsEshaw]

sorry i posted 3 times!!! trying to figure this site out.

 

[janierose]

Did you do IVF with PGD? I am looking for positive outcomes with it. Still remaining hopeful

 

[janierose]

I have had a rough go of things.
Dec 09-chemical pregnancy with Clomid
March 10- #1 IVF Cycle -Misc at 7 weeks and found out about my BT of 5 and 18 from the d and e
IVF #2 August 2010-4 follies and 2 were fertilized. Chem. pregnancy
IVF #3 Nov. 2010- transferred 6, 1 stuck. Amnio at 18 wks but terminted due to unbalanced translocation

IVF#4 with PGD- In May/June. Hope this works and brings us angels!

 

[MrsEshaw]

janie,
i did ivf/pgd in january. of the 4 embroys tested all were abnormal. (we had 11 embryos but the lab screwed up and we lost some. they are giving us a free cycle to make up for it).
I actually start my shots tonight.

i know of a lady who had success w/pgd for her translocation.

 

[Jane1972]

Hi
I am very lucky & I am 32weeks preg after IVF with ICIS & PGD. I had 18 eggs collected, only 5 fertilised & only 3 were of good quaility & only 1 wasn't affected with my translocation, so 1 was transfered. Before this I had 5 MC so I know how lucky I am for this to work first time for me, I am not sure I would have been able to cope having to do it all again, I really respect you ladies & wish you all the best in your forthcoming treatments. I should also mention that I had a son 16 years ago before I knew I had this translocation & he is a perfect healthy & happy young man now although not sure if he has a balanced translocation or not.
Jane.xx

 

[MrsEshaw]

I have had a rough go of things.
Dec 09-chemical pregnancy with Clomid
March 10- #1 IVF Cycle -Misc at 7 weeks and found out about my BT of 5 and 18 from the d and e
IVF #2 August 2010-4 follies and 2 were fertilized. Chem. pregnancy
IVF #3 Nov. 2010- transferred 6, 1 stuck. Amnio at 18 wks but terminted due to unbalanced translocation

IVF#4 with PGD- In May/June. Hope this works and brings us angels!

Janie, I see that you live in Boston too! Where are you doing your IVF at? I'm at brigham and womens.

Jane!!! Congratulations. Your story gives me hope. I was just crushed when there were no normal embryos last cycle. I hope this cycle is the one. I agree the process is miserable.

 

[janierose]

I am sorry that you had to go through all that an nothing was transferred. I am also at the brigham and I do believe that I am in good hands. I spoke to a women who did 7 IVF/PGD cycles but she has 2 healthy babies.
How many cycles did your friend go through before she had a healthy baby?

 

[janierose]

How many cycles have you done? This May will be the first cycle doing PGD with IVF and we are only looking for the translocation. I am also going to do a CVS. I cant wait until i am 16 weeks...it is torture.

 

[MrsEshaw]

Janie,
my Re is dr fox. who do you see there?
This is my 2nd cycle.
The lady i referred to I don't personally know. Dr fox told me about her. she did ivf/pgd 3x and is now 30 weeks pregnant.

I have a son, who has 13q deletion (i didn't know i had the translocation until our son was diagnosed w/his chromosome problem). so some of those abnormal embryos do make it to birth! I love my son, he is a gift from God...but a "normal" kid would be nice too.

 

[janierose]

I have dr fox also. I really like her. I am just waiting for my period because I had a d and e in March, I was 20 weeks pregnant. It was very traumatic. but, I am very anxious to get my period so then I can start the next cycle in Mayish.

 

[janierose]

Have you started the shots yet?

 

[MrsEshaw]

Janie,
I started the shots on Wednesday night.

How ironic about Dr. Fox, I like her too. She mentioned that she had another translocation patient, it's probably you!
I'm sorry for everything you went through in March. I hope your period comes quickly so you can start again ASAP. I really hope this works for us. I feel like we've been through enough and deserve it!

 

[janierose]

I really hope that this works for us too!! I would love to hear how you are doing if that is ok. And, I will keep you posted with my progress too. what protocol are you doing? Dr Fox told me that I am on the most aggressive, when I start. Once Once I get my period I then take the pill for a few days, then lupron in the am and pm. I dont remember the gonal g and menopur doses because it was in October but I think it was 4 vials of menopur and 300 gonal f.

 

[janierose]

I would be more than happy to give you my personal e mail