fear of birth defects?

jezebel57 · January 2013

So because I always have to have SOMETHING to worry about, now that pregnancy is within my grasp with the upcoming IVF, I have now allowed myself to start worrying about what may happen when I actually become pregnant. I would love to do PGD but my RE does not recommend unless there is a reason to think we would need it. Plus I don't know how much extra $$ it would be. I am now concerned with the thought of what if something is wrong with the baby? should i get an amnio since i will be 37 at time of pregnancy? would I do something about it if the results were abnormal after knowing how hard i worked to get there? so many thoughts going through my head right now. do IF'ers ever stop worrying?!

Gr8te · January 2013

I think most people worry. I will get any tests that are recommended. You just have to remember the statistics of a normal healthy baby are in our favor.

Good Luck!

DebateThis · January 2013

Gr8te:
I think most people worry. I will get any tests that are recommended. You just have to remember the statistics of a normal healthy baby are in our favor.
Good Luck!

This.

Also, Talking with YH about as many "what ifs" as possible will probably help, too. We've already had one loss due to chromosomal defect so we've talked extensively about what we plan to do if it happens again, etc. You can't control the future, but you can certainly be as prepared and informed as possible.

jadwedd · January 2013

Nope ifers never ever stop worrying. I think at my dr he said that the testing is $250 per embryo. Which was way cheaper than we thought it would be. But he was only going to do that if the ivf didn't work and we had some frosties to test. So we did not have to worry about the testing, or the freezing cost. ($1200) I am just trying to take it one calamity at a time with all this. But I do worry because I will be 37 soon too. But I think as long as we don't FEEL 37 it will be ok

BootsOrHearts · January 2013

One thing at a time. Breathe! :-)

SCrier · January 2013

I think it is a relief to hear that others have the same fear as i feel the same way. Right now I just worry about the possibility of IF i will be able to get pregnant and when/if I do i will worry about miscarry and then from there I will worry about if the the baby be healthy. Unfortunately I think the stress of all this just causes constant worry.

RosyGlow · January 2013

I definitely think this is normal to worry so much! Just in case it is helpful, your doctor is correct to suggest that you don't need PGD (preimplantation genetic diagnosis) unless there is a known genetic mutation or genetic disorder in your family. On the one hand, I hear you saying that you are worrying for worry's sake, but on the other hand, maybe some more information about PGD/PGS would help? There is a pretty common misunderstanding between PGD and PGS on the internet. I think your doctor is probably right not to recommend PGD unless there is a genetic disorder in your family history (like there is in mine), however, you might want to ask your doctor to explain PGS testing to you? They are really quite different.

PGS (Pre-implantation genetic screening) is a common way to avoid a chromosomal disorder or birth defect (such as 21 extra chromosomes, resulting in down syndrome, or 16 extra chromosomes, which my genetic counselor told me is one common reason for miscarriage, etc.) We are choosing to go ahead with both PGD and PGS. PGS costs about $1800 at the lab we will use (Genesis). This includes checking for missing/extra chromosomes in up to 8 embryos. Embryos beyond 8 are charged at a rate of $250 per embryo.

I just thought it might be helpful to hear my experience, but I also think there is a point in all of this where we have to learn to let go of fear and embrace the unknown. Life is a beautiful and mysterious thing...it may not be totally predictable, but we are choosing to take our chances and do both types of testing since we are already doing PGD to test for my family's single-gene defect anyway. One step of further testing seems worth it for me, especially because I don't want to end up transferring a healthy embryo (one without my family's disorder) but end up transferring an embryo with extra or missing chromosomes that will likely (or certainly?) end up in miscarriage.

Good luck! PGS can be a decision you make toward the end, too, I believe. I think it's best to know all of your options, but then be wary of worrying about each choice, too.

jezebel57 · January 2013

Needed this reminder boots, thank you!

jezebel57 · January 2013

rosy, thank you for that info! I really didn't realize that there was a difference between the 2!

nawlinsgrl · January 2013

***TICKER WARNING, PAIF/SAIF POSTER***

I can't speak to PGD/PGS, but can tell you there are other options besides amnio once you are pregnant. For my first pregnancy, we opted to do the quad screen, which is an ultrasound (NT Scan) that checks the folds in the baby's neck between 11 and 14 weeks, along with some blood work done at a couple points in time, to determine the odds (can't tell you specifics) of chromosomal abnormalities. It is completely non-invasive, so no risk to the baby.

There is also CVS (chorionic villus sampling), which is slightly more invasive, and has a low chance of miscarriage (1%). Here is a little info: CVS. And of course, there is also the amnio.

DH and I decided to do the quad screen,and if we felt there was a major risk, we would move forward with either CVS or Amnio, but luckily we felt comfortable with our results and didn't pursue additional testing (and none was recommended).

During that pregnancy, a new test was just starting to be used, called MaterniT21: MaterniT21 This one is supposed to tell you yes/no whether there are chromosomal abnormalities, and added bonus is that it can tell you the sex of your child. I believe it can be done any time after 10 weeks.

This time, my RE recommended both the quad screen (or at least the NT scan) and the Materni21. I was already scheduled for the quad screen and called the office back to add the T21, but the doctor said I had to do one or the other, because the blood work overlaps. She said we can discuss it when I go in for my appt in a week and a half. I am going to push for the NT scan and T21 test, but will see what the doctor recommends.

Sorry so long, but hopefully there is some useful information in here for you!

jakraft837 · January 2013

I actually just had this convo with my SIL the other day. She asked me if i would do genetic testing (if avail and could afford it). A few years ago we had a situation in our family that someone was born with Down Syndrome. This was discovered prior to the child's birth. One parent wanted to terminate, the other (mom) did not. Ultimetley, they kept the child which started a lot of resentment in the marriage. The child spent most of his life in the hospital. Sadly, he passed at the age of 3. I was very close to these family members and child. I said after this experience my opinon on genetic testing had changed and that i would do it (amoung other things I sore to DH we would discuss prior to having a baby).

However, now that i could realistically be presented with it, I have to admit i'm not so sure anymore. I by no means stay up at night worrying about what could happen-that is just not my nature. But i do have fears in the back of my head and never want to go thru what i saw that marriage and that woman as a mother went thru! I could really argue both sides of it, so i'm not much help to "side" one way or the other. I think this is a very hard decision for any parent, but as you stated, maybe even a little harder for us IF'ers. We have done so much to get pregnant and have that baby, and most of us realize this may be the only child we bear-so i could see how that would factor.

Don't worry-but i do think you and your DH should just have a discussion about it to at least put it out there. That way if you are really presented with that, you have some ideas of how the other person feels.

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