I am just curious if any other parents of children with CF have ever had any type of prenatal testing done once they found out they were pregnant to see if the fetus had CF. My husband and I have a 2 1/2 yr. old son with CF (delta F508 mutation). It took us forever to decide if we were ever going to have any more children. Finally, after 2 yrs., we decided to put fate into God's hands. We became pregnant in February. We were excited, yet frightened at the same time, wondering if we would possibly be able to care for 2 kids with CF. We had decided prior to getting pregnant that we were going to have the CVS done rather than an amniocentesis. Reason being is because we could find the results out earlier in the pregnancy and we didn't have to wait as long for the results. We met with the genetic counselor on a couple of occasions and went through the risks of having this procedure done. I was 10 1/2 wks. along when they did the CVS. 4 days later we found out we were going to be having a baby girl that was CF FREE!!! We were so excited and relieved. I began to get fairly sick after this procedure, blaming it on "morning sickness". I dropped 13 lbs. when it was all said and done. About 17 wks. into my pregnancy, I began getting really bad lower back pain and severe vomitting and then I began to bleed. My doctor passed it off at first as just being some GI illness, but my bleeding and back pain continued to get worse. That is when they determined i had a placenta abruption. I was put on strict bed rest and went in to see my doc everyday where she heard a heart beat up until Thurs. 06/10. On that day, my doc sent me to see the doc that did the CVS. That is where they discovered no fetal movement or heartbeat on the ultrasound. My husband and I were completely devestated. How could this be happening to us? Why us again? I ended up having to deliver her. They induced me at 5 p.m. on Thurs. night and she was born Fri. morning. She was absoloutley perfect . . . 10 fingers, 10 toes. She was 6 ounces and 8 inches long. She was beautiful. Like i said earlier, i was just wondering if anyone else has had the CVS done to dx. CF prenatally. If so, did you have complications like this? I have been blaming myself for Rylie's death. Sometimes i think if i wouldn't have had the CVS done, i would have went on to have a normal pregnancy and she would have lived. It is hard not to blame myself for this having happened to her. So many people have said, "You'll be able to have more kids". They just don't understand the risk of our next child having CF. They don't understand this was our chance to have had a healthy baby!! Thank you all for taking the time to read this. I am sorry i rambled on like this, but it helps to get it off of my chest.
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CVS testing to dx. CF
- Thread starter anonymous
- Start date
Emily was 2-1/2 when we found out I was pregnant again. We had been discussing our options when we found out. Our Ob/Gyn told us about a new procedure being done called CVS. (This was 21 years ago) We were the 13th couple in the Northeast to have this procedure done. It was very uncomfortable (to say the least) and it seemed to take FOREVER to get the results but Jody was CF free and not even a carrier. I did have a little bleeding after the procedure but nothing major and she was born 7 months later. I understand that the procedure is easier now, less painful, much safer and you get the results much much quicker. I am sorry it didn't work out for you, but I would say to you "try again if you want more children". You have to remember that the genetic lottery odds are in your favor. 4-1Let us know how things go!
Augustmoon
New member
I don't know what to say except I am so sorry for your loss. That is heartbreaking and I will be praying for you. I, too, have a (now 10 month old) son with CF. If it makes you feel ANY better, I would've done the same in your situation...and I think most people would have. I know how guilty you must feel...BUT THIS IS NOT YOUR FAULT! Again, I'm so sorry. Try try try again!! We'll be thinking of you and please keep us updated!
Oh My Gosh, I am so sorry for your loss. your post just about brought me to tears. My daughter is 5 and 1/2 and I will be delivering our son next week. I did not hav the CVS but had the amnio with no complications. Just a bit of cramping that day. We had to wait until I was about 18 weeks along before we could have the test, but it wasn't going to change the outcome anyway, so we waited. The reason I needed to have the test done was so that I could figure everything out before the baby came if he were to have CF. I needed to know for my own sanity during my pregnancy. please do not blame yourself. there could be other reasons than the CVS for your loss. you will never know if it was the CVS or not so do not torture yourself. Many babies are stillborn who have had no prenatal testing at all. I know of a young woman who a very similar thing happened to last year and she had no prenatal genetic testing. her baby just passed away in utero, with no real reason ever given. I know that it might not help to know that sometimes it just happens but I don't know what else to tell you. I will keep you and your baby in my prayers.Andrea
Augustmoon
New member
Yes, I forgot to mention that too...A very good friend of mine was pregnant the same time as me (with my first...w/o CF) and she went to full term and on her due date did not feel the fetus move, went to the dr., and found out the baby had died. No reason was ever found. She now has two kids. So, please don't blame yourself. These things happen and there is no rhyme or reason sometimes! <img src="i/expressions/face-icon-small-blush.gif" border="0">( Keeping you in my prayers...
I am so sorry to hear of your loss I really am. Maybe you and your husband should look into IVF. That way you'll know the baby is CF free and you wont have to put yourself through all this again. I know this sounds heartless and I don't mean it to be but would this loss have been easier if the baby had CF?Please know there is light at the end of this tunnel... <img src="i/expressions/rose.gif" border="0">
I am so sorry for your loss, it is devastating to have that happen and it's nothing that you did!I am trying for another baby at the moment our son is 14mths with CF.I was going to have a CVS as well, I am going to get a little more info about this now after reading your post which brought tears to my eyes.I offer you my sympathy in this terrible time.RebekahMother to Matt 14mths w/cf
I had cvs done to determine if our baby girl had cf. She did not. You should absolutely not feel guilty. We are lucky that we have options with our odds 1/4. When I found out that my husband and I were carriers I was so angry! When I think about it still I get angry and I say that I will do what it takes to have another healthy child!!!!!!! Another way if the $$$ is there is to have IVF with pre-diagnostic testing. If we decide to have another I think that I will need to go this route just because of having to make a most difficult decision if the baby was positive. Why us right? Well, I say now that we are lucky for having this information and this technology and it could be alot worse. Take care, go for what you want and what you feel is right. After all we only have one life and those of us who want babies and families need to go the extra mile if we want it bad enough!!!!
Just wanted to thank everyone for their replies. I guess i just have to keep telling myself everything happens for a reason. Yes, i think it would have been less difficult to deal with if the baby would of had CF, but it still would have been devestating. My mom always tells me "God will never give you more than you can handle". My reply to that is " I just wish he wouldn't trust me so much". I kept asking God during this pregnancy to spare the baby if something was going to be wrong with it. Who knows why this happened. Maybe something would have been wrong with her. Maybe it is a sign that our son will need more care down the road. Again, thank you to everyone for all of their support and encouragement. It means a lot.Sincerely, Jodi - Mom of Tucker w/CF
I am so sorry for your loss. How devastating. As the others have said, do NOT blame yourself. There's no way to know if it was the CVS or something entirely different. My 2nd child died in utero. It was fairly early in my pregnancy that it happened - roughly 2 months; however, I continued to have severe nausea and no symptoms that the baby had died until they couldn't find the heartbeat at my 3 month check. U/S revealed that the baby had died 5 wks prior. I blamed myself - the caffiene I drank before I knew I was pregnant - the long hours I'd worked in the first 2 months of the pregnancy - even the illness I had right around the time the baby probably died. In the end, I just had to make peace with his death and move on, accepting that I won't have the answer in this life. Prayers for peace for you. And, as the others have said, if you really want another child and it's God's will, you will have another child one way or the other<img src="i/expressions/face-icon-small-smile.gif" border="0"> Good luck and hugs.
I'm wondering why the poster above was "angry" about being a carrier? Who are you angry at?I'm a 37 year old w/ CF & am a little offended by your comment. One of my CF friends that is in his mid 40's was a care taker for his mother as she was dying & his answer when someone wants an abortion because their child has CF....."You may just be getting rid of your care taker when you are old." Just food for thought...
We were not tested during the pregnacy for cf, we did not find out until later. I was not aware that abortion was given as an option if the fetus(baby) was found to have cf. Is that true, do they just say -your baby has cystic fibrosis, you need to decide if you want to continue the pregnacy- ? That is awful! I had no idea. To me this(cf) does not really justify an abortion. People with cf are living so long now, and babies that are born today, who knows, they will probally live nearly as long as people without cf ( at least that is what I pray for everyday). I hope that the parents do a vast amount of research before they make their decisions.
NoDayButToday
New member
There was a very intriguing article about this (people aborting babies after they ave genetic testing done) in the NY Times two sundays ago (father's day). Because in this age of genetic testing many people are getting abortions when they find out something's wrong with their baby, and the article talks about how this is opening a sort of Pandora's box-- are we going to start aborting babies who will be ugly? I can not say what I would do in such a position, I've never been pregnant. It was a very interesting article and may be worth a look on the NY Times website.
Just to let you all know, abortion never crossed our mind. My husband and I wanted to find out as early as possible in the pregnancy if our child had CF or not, that is why we opted for the CVS. I needed to know early on so i wouldn't worry throughout the entire pregnancy and so i could prepare for possibly having to care for 2 children with CF. The genetic counselor we met with did discuss our options if the child had CF, such as aborting, putting up for adoption, etc. There was no way in hell I would have ever aborted this child if it did have CF!! We were able to find out our daughter was a carrier only, through the testing. I just want people who are considering having prenatal testing done for CF to be aware of what could possibly happen. We just don't want anyone else to have to experience the pain we are going through. Like an earlier post said, please think twice before considering abortion - any child is a gift from God. My husband and I have decided if we ever do have anymore children, we will not undergo ANY prenatal testing. We will just be happy to have another child in our lives and a sibling for our son.Jodi, mom of Tucker w/cf
I was six months pregnant when I learned that my son had CF. I did NOT have any genetic testing done - I felt like I was on the losing side of the odds (1 in 4 chance of having a CF child, ?% chance of risking the pregnancy with genetic testing). I pushed it to the back of my mind (as far as I could) for the remainder of my pregancy. When I did think about it, I just told myself to be prepared that the baby would have cf. They took the cord blood after our daughter was born and sent it to a lab for genetic testing. The 2 weeks we waited for the results, I still tried to push it to the back of my mind but EVERYTHING made me think she did / did not have cf. Oh - she weighed a pound more, she doesn't have CF. OR - she pooped within the first 24 hours, she must not have CF. Or - she has a stomach ache, she must have CF. Or - her nose is snotty, she has CF. She rests peacefully, she must not have CF, OR she's a different sex than my first - must be CF free. Believe me, those 2 weeks were the most nervewracking for me!! In the end, I am glad I waited to find out.... no CF.That said - you did not do anything wrong and should not blame yourself for your beautiful little girl's death. Life does not seem fair and people don't always get what they deserve. But keep your faith and your head up - you have a beautiful little boy to raise.And yes - I do suggest to all CF parents who are carriers to try to have IVF on a genetically healthy baby. Yes, it costs $$ but you spend a lot of money on raising a CF child. More importantly, it is your future child's health you are risking. Of course, YOU will love your child regardless.... but what about your child's best interests??
I read that article in the NY paper and wondered what kind of a Pandora's box we are opening. Will parents abort a baby because he has brown eyes instead of blue or brown hair instead of blonde? I think as a society we have entered very dangerous territory where we don't necessarily belong (even though we have the technology). Down the road, who will have the right to say which babies live and which die? Have any of you dealt with insurance companies where paper pushers are making medical decisions for your children not knowing what they are doing? Decisions where you have to explain a medical procedure to them before they can approve or deny it? Think about who will be making those decisions down the road about who lives and who dies?Okay....sorry...I am off my soapbox now! Have a nice evening everyone! <img src="i/expressions/face-icon-small-happy.gif" border="0">
I just wanted to clarify things from my post too. We opted for the genetic testing through amnio so we could prepare for another child with CF if our 2nd child had it. (things like should we be watching-through ultrasound- for bowel blockage, should we choose to deliver this child at the hospital near the Children's hospital where the CF clinic is instead of the local hospital, in case there is a problem......... also I wanted to educate myself about what to look for with a newborn with CF since our daughter was 9 months old when she was diagnosed.........) We would not have chosen any other option. Abortion was not even being considered. Anyway, we were lucky to find out that the baby we are having next week is just a carrier.Andrea
Don't be too offended by the person who is angry at being a carrier. Anger is a natural part of greif. maybe they are greiving the loss of the "normal" status that they believed all along that they had? Also lots of people get angry when the feel like something is out of thier control. And being a carrier would certainly qualify as out of our control. I sure didn't ask to be a carrier and my child didn't ask to have CF, both were out of our control. ( I personally never did the angry about it thing, but that is just me.......)Andrea
I was so glad to read all the way down and see those of you who clarified their reason for having the prenatal testing. I felt disgust at the thought of anyone aborting a baby because it had CF. That is absurd! Anything can happen to our children, in utero or out and for us to think we have the right to terminate someone because they are not who we think they should be is just disgusting. I am relieved though to have read on and seen your clarifications.