Post # 1
This post is about my sister.
Backstory: She has a recessive gene for cystic fibrosis as does her husband. The likelihood that the two of them will have a baby with CF is 25%. She got pregnant in 2008 and had a healthy baby boy in April 2009. My sister has never had a problem getting pregnant- but the problem is she has to wait 3 months into the pregnancy to determine if the baby has CF.
In August 2010 they tried for another baby, got pregnant right away and three months into the pregnancy terminated because they found out the baby had CF. In March 2011 (last year), she got pregnant again, with a baby due on her birthday and found out again 3 months later the baby had CF. She terminated both these pregnancies.
Finally, she was approved through her husband’s insurance company for in-vitro (so they could test the embryos for CF without her having to be pregnant for 3 months and terminating). Her eggs were all “slow growers” and none of them implanted the first round. The second round of in-vitro, they had 13 embryos and ONLY 1was at the right cellular growth for the CF testing. They implanted the embryo before the couple of days it took to get the results because they were hoping it would “grow” faster inside her than in the dish and she would take the morning after pilll if the embryo had CF. Well the embryo never “took” but the results came back and that embryo too had cystic fibrosis….what the hell!? If the odds are 25%, how does this make any sense? Can anyone relate?
She is trying the natural way again because she didn’t want to keep taking the hormones through in vitro + insurance didn’t cover it all, so she still has to pay $7,500 per session!
Post # 3
@Dell79: How awful! It does seem like her reality is greater than 25%, but maybe it’s just bad luck. 🙁 I don’t know much about CF, but maybe there are some other genes associated with the disease that your sister and BIL carry that haven’t yet been identified by science??
There is a lot of breast and ovarian cancer in my family, but my mom and aunts (who all had cancer at a young age) have tested negative for the BRAC genes. I went to a genetic counselor and they recommended I get yearly mammograms, ultrasounds, and MRIs. They said there is obviously a genetic link, they just haven’t found it yet.
That being said, I hope in your sister’s case it is just bad luck and that their luck turns around soon! My thoughts and prayers go out to your family.
Post # 4
The odds are for each pregnancy that the embryo will have cystic fibrosis. Yeah it does seem like the odds are stacked against her but each seperate time is on it’s own. It is possible that there are other genetic factors for cystic fibrosis, there is so much we still don’t know about the human genome.
I wish your sister luck with having a healthy baby.
Post # 5
Each individual fetus has a 1 in 4 chances of having CF. It’s not an overall average for all pregnancies.
Post # 6
This must be a terrible thing to go through. I couldn’t imagine keep getting pregnant and then aborting your child, health issues or not I can imagine this take an emotional toll on your sister. My cousin tested positive for the CF gene and they did do IVF and not have 4 beautiful healthy little girls. Hopefully she can find a way to work with insurance, even if it takes longer to get pregnant to work this out.
Post # 7
I’m so sorry for your sister. Each time they conceive, the embryo has a 25% chance of having CF, so she’s just really unlucky that she has fallen in that 25% on the last 3 tries. It really sounds like she’s been put through the wringer. I really wish her luck on her next try to end up in the other 75%!!
Post # 8
How heartbreaking for your sister. I hope their next pregnancy is CF free.
Post # 9
I feel so sorry for your sister. That is just horrible. Hoping she has a CF free pregnancy soon!!!
Post # 10
wow, thank you all for your supportive posts! I have never posted on this section of the board before but I really appreciate all your responses. I know that technically the odds are still 25% every time she gets pregnant and that they don’t diminish–do I understand it? Not really…it just seems like there should be an entire other set of odds to getting the 25% odds 3 times in a row, do you know what I mean?
@roxy821: that’s amazing to hear about your cousin- did her husband also have the gene for it? Yes- the terminations have been extraordinarily difficult for her, especially the last one with the baby due on her birthday.
@78h2o: that’s an interesting thought…it’s true who knows what the actual makeup of their genes are or if science is really advanced enough to get a full picture of what is going on.
Post # 11
Wow – how heartbreaking. It is one thing to know that each embryo has a separate 25% chance of having CF but it is a totally different thing (emotionally) to have to deal with the heartbreak 3 times in a row.