Pregnant CF Carrier

[anonymous]

Hi my name is Jennifer,
My husband and I are both CF carriers, he and I both have a child from different marriages. He has an 11 yo with CF and I have an 11 w/o CF. We also have a daughter together, we discovered during pregnancy she was a carrier, contracted my husbands cf gene, but not mine. Thank God. We decided not to have anymore children, as I didn't discover I was a carrier until I was pregnant with her, I just wanted to rule out the posability, little did I know. Well, I have recently learned that I am pregnant, due in August/05. This was not planned. I am terrified that the baby will have CF. We keep my step-son every summer and Christmas Holiday and it breaks my heart to see all that he goes through. The worst part for him is the gas, kids at school make fun of him (kids can be so cruel!) and he is begining to look very sick lately, weight loss and chronic coughing. I guess part of what I want to know is, has anyone had the CVS test done? It sounds terribly invasive but not knowing and wondering all the time is killing me. I was told the CVS test needs to be done before 11 weeks of pregnancy, I am about 8 or 9 weeks so I have to make a decision pretty soon. I'm wondering if I should wait and do the amnio, or if I should just leave well enough alone. Has anyone struggled with this decision. I feel if I do the testing and miscarry because of it, I would never forgive myself. I read an article of a lady who had a child with cf and did the CVS during her second pregnancy which determined she had a healthy baby girl and then she lost the baby because of the CVS test. How terrible is that. I don't mean to sound so selfish, I'm just really struggling over this. Any advice would be greatly appreciated.
Thanks
Jennifer

 

[anonymous]

Hi, My youngest daughter has CF, but I would like to relate an experience I had with my second daughter. I had a test done when I was pregnant with her that indicated a higher risk of Down's Syndrome. My Ob suggested an amnio to find out for sure. I was struck with the similar dilemma, thinking about what might happen if I lost my baby due to the amnio.

My Ob finally helped clear my mind by asking me what I would do if the baby did test positive for Down's. I said that I would continue with the pregnancy regardless of what happened. She said, "If you aren't going to do anything regardless of the result, then don't risk the test."

This might be the question you need to ask yourself. Hope this helps, I know it is a very hard decision.

Maria (mother of three daughters, the youngest, Samantha w/cf)

 

[anonymous]

I went through the same situation as the last post but with CF and the lady asked me the same thing and gave the same reply, I would not do anything even if I knew. My twins do have CF and it was very hard emotionally at first but when I look down at those beautiful smiles my heart just melts!! They are everything to me and would not trade them for the world!!!! They are so precious.. when I think that we could of had that test done and found out and got rid of them, I just loose my breath. It wouldnt of been worth getting rid of them just so we could have babies that from what we knew of didnt have anything wrong with them... I would have never got a chance to see these little miracles that I have, I love them so much!!!!! Sorry for my rambling, now you made me cry, GEE THANKS!!!!LOL


Jen

 

[anonymous]

Have the test done so you know what you are in for.

 

[anonymous]

Hi There,
I am 5 months pregnant with my second child. My first has CF.
My advice is to make up your mind what your decision is before you embark on the testing.
I have had a CVS with this child, I am not going to state whatever choice I would of made if it was positive because I don't think thats what you are asking.
The test itself can be hard, not getting it done but the wait for the results, this baby is a carrier so we are feeling very fortunate.
However after experiencing the stress of the testing and the wait we will not be embarking on this again.
Everyones choices are very personal and no one can know whether it is right for you to continue or not, whatever choice you make it will only be between you and your partner.
My advice is once you make your decision I found it easier not discuss it with others who will not be there first hand to help raise the child.
We all know what our capabilities are and there is nothing wrong with being honest with yourself also.
Just so I don't upset people, I am not suggesting that she keeps the baby or doesn't. I am only telling her what it was like for me.
I wish you the best of luck!
Rebekah Mother to Matt 21mths w/CF and baby on the way!

 

[anonymous]

Hey Jennifer,

I am the lady that you were talking about in your post. My advice to you is to do what YOU and YOUR HUSBAND feel is the best for the two of you, don't let anyone elses posts on this board influence your decision. I will not lie, I have (and still continue to) blamed myself over and over again for having had the CVS done, which caused me to lose my daughter. My doctor said that the risk of miscarrying with the CVS procedure is something like .8%. Wouldn't you know it, me and my husband always seem to be in that percentage. I can totally understand why you want the procedure done. If you do decide to go through with the CVS, just make sure you find a OB/GYN who has performed SEVERAL of them, so you know that he/she is "specialized" in them. Good luck with your decision and I will be praying that all goes well.

Jodi, Mom to Tucker w/cf

 

[anonymous]

Jodi,
I am so sorry you had to go throught what you did. It's my biggest fear in taking this test. This is the hardest decision I've ever been faced with and I don't know what to do. I'm normally so good in tough situations. I've been a deputy sheriff for 7 years. But nothing prepares you for something like this. Can you tell me how far along you were when you had the CVS? And do you sometimes think you may have miscarried anyway, with or without the CVS, or do you feel the CVS was responsible? Please don't answer these questions if they are difficult for you. Thanks so much for your response.

Rebekah,
I was lucky once too, my daughter is a carrier. I think that is why I'm more afraid this time. I feel like I've been too lucky and now I'm dummed. My doctor asked me yesterday after my u/s what I intended to do, but I honestly just don't want to have to make that decision. I want to do the test. I can't take not knowing for the next 7 months. But, I don't feel as though I can answer the question, "What will you do if your child has Cystic Fibrosis?". I feel like such a jerk. I just want the test to say everything is fine, so I never have to make a decision at all. One other thing, I'm terrified of having the test, is it very painful? How long does it take? And can you drive or go back to work after having it? Thanks for your response.

 

[jaime]

I work in ultrasound in a Center for Fetal medicine and Prenatal Genetics, we do many CVS procedures for all different reasons. Generally they are performed between 11-14 weeks. The test is either done thru the abdomen (like an amnio) or thru the cervix, depending on where the placenta is located. Preliminary results of chromosome tests (such as for Down Syndrome) can be done in 48 hours but for CF testing it takes a little longer. The actual procedure does not take long, most of the time is prepping and cleaning and stuff. Patients are ususallly advised to take it easy for 24 hrs after procedure, not doing anything too strenuous or lifting anything too heavy.
Your best bet is probably to ask your OB for more info on someplace close to you that performs CVS. Make sure the doctor is experienced. Good luck with whatever choice you make! Feel free to email me if you want.

 

[anonymous]

Jennifer,
I am glad you responded again. Do I think i would have miscarried if i didn't have the CVS done? . . . I would have to say no. Reason being is my regular OB/GYN knew i had an infection BEFORE i even had the CVS done, but somehow failed to communicate to the OB/GYN who did the CVS that i had this infection. But the OB/GYN who did the cvs failed to ask me if i had any type of current infection. So, that is why i say that i am almost positive i would not have miscarried if i didn't have the procedure done. They did my cvs through my cervix when i was 11 weeks. I lost my daughter 7 1/2 weeks later. The procedure itself is a bit uncomfortable. My advice to you is to get checked for any type of infection prior to the CVS, especially if it is being done through the cervix. You have no idea how mad i am at those doctors. I ended up starting to get violently ill about 3 weeks after the CVS, experiencing some really severe vomitting and back pain. My OB/GYN kept telling me it was just "morning sickness". She finally contacted the MD who did the CVS when i began to start bleeding about 6 weeks after the procedure, but the MD told her to just "monitor" me and put me on bed rest. I was so sick, i really thought i was going to die myself. So, my advice to you if you opt to have the procedure done is to just keep a close eye on how you are feeling, and make sure to report any changes to you MD immediately. Come to find out, if they would have caught that my placenta was infected earlier, my daughter would be here with me today. I am not trying to scare you from doing this procedure. Keep in mind most of the time everything goes o.k. . . . there is only a slight risk of miscarrying. I totally understand why you want this testing done. Again, best of luck in your decision. Everything in life happens for a reason. Take care!

Jodi, Mom to Tucker w/cf

 

[anonymous]

I had a very similar situation myself. I am married to a man with a 9yr old son w/cf. Even though we tried to prevent pregnancy I turned up pregnant anyway and later found out I indeed was a carrier. I was devastated ....completely devastated. First the baby I was carrying may have CF and I knew I could not have more children now knowing that our chances were 25%. I refused any testing and decided to carry the baby till term anyway. I figured that this baby was meant to be....and god forbid if I went and did CVS and then had complications and lost the baby. The pregnancy was brutal...not knowing. But in the end my son is healthy and the toture was well worth it. We have decided not to have more children...personal choice and everyone has the right to this choice. But even if my son had been born with CF I would love him and be the best mom ever regardless....I was meant to be his Mum and he my son. This is a very big decision for you to make and I feel your pain...I have lived in your shoes my friend. Follow your gut instict. Remeber that being born today with CF ther is hope....

 

[anonymous]

I just wanted to add to the last post( I wrote it) ...one thing I found very hard was telling my family that the baby may have CF. It was the look of pity in their eyes...so after disclosing it to a few close family members we decided to keep it a secret. My husbands family only found out after our son was diagnosed CF free. This may sound odd to someone who has not been through this before. Pregnancy is supposed to be a wonderful happy time and when you have this burden to carry you just have to do what ever helps you get through it. This helped me alot.....

 

[anonymous]

Hey Jennifer,
Rebekah here again.
I just wanted to let you know that my CVS was performed through the abdomen, and it was painless for me.
I had a great specialist who made sure everything was well checked out and that I also was in good health and had no infections too.
I have read that the miscarriage or complication rate is higher with having the procedure through the Cervix, I am not sure why.
Where I live in New Zealand (little island in the South Pacific) theya re not allowed to do CVS through the Cervix or before 11 weeks gestation.
I know what you mean about tempting fate, and not wanting to have to make a decision, having been through it myself I know that it is a personal hell and you have my understanding.
I have however had a bit of bleeding this pregnancy and so I am under a high riskj team to make sure that I deliver this bagy as close to term as possible.
I am thinking of you.
Rebekah mother to Mtt 21mths w/cf and baby on the way