My husband and I found out at 19 weeks through amnio that our baby to be has CF. Termination never crossed our minds. We were very angry that the CF carrier test was something our OBGYN could have (should have) offered us prior to conception (according to both the AMA and the ACOG). That being said, if we were to try to have another baby we would go another route instead of rolling the dice with the one in four chance. We wanted the genetic testing so we could begin to plan and educate ourselves and family members on what CF is. We also had a chance to meet with several doctors and multiple hospitals which allowed us to choose a great CF doctor for the baby. I don't mean to say it in this way but is also allowed us to grieve the loss of a healthy child. We know this baby is special and has already brought so much to our lives. It was my hope in finding out sooner about the CF that I could work through my emotions enough so when the baby was born I was not so overwhelmed with the diagnosis that I missed out on the bonding experience. I think in the long run it has been better for me and my family to know prior to the birth. I am glad the genetic testing is an option for others in my family (and friends too) who are considering starting a family as well.
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CVS testing to dx. CF
- Thread starter anonymous
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AbsintheSorrow
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I still mourn the loss of what could've been a healthy life for myself. It's completely fine. But at the same time, you're right, it's much better to know ahead of time that the baby has CF. Too many times I've heard about CFers not knowing until they were toddlers, or teenagers or older and it's only caused damage. This way, and being that your baby is being born in 2004, he/she will have a much larger chance of living a closer to normal life than if you hadn't known or if the kid had been born in the 70s or 80s or whatever.
I too am so sorry for your loss. I had an amniocentesis with my daughter because of my age at delivery (35) and was told everything was fine. When we found out at 4 months that she had CF, I immediately contacted the genetic center that did the testing and was told they didn't test for CF. In order to do that, it was sent out of state and you must request it. With no family history of CF, why would I have done that?I just want people to know that with prenatal testing, ask for a CF test.
I don't really know anything about the CVS test but, I did have an amnio because My Alpha protein screen came back abnormal. I had an ultra sound and we found out it was twins(talk about shock) well after they ran the alpha test over they told us they thought one of the twins had downs. So we decided to have the amnio done so we would be prepared. Well both twins were fine no downs. We were so happy. After the twins were born they were really sick all the time. They were 8 weeks early and MD just kept saying it was because they were early. But, deep in my heart I knew something was wrong. Well it was wrong. They both were Dx with CF at 18 months old. I kept blamming myself for so long. If I hadn't had the amnio they would have been okay. I know that is not true but you know how us mothers are. I am not trying to be ugly but, maybe sometimes we should just let well enough alone. I know you want a healthy child we all do. But would you not have the baby if it had CF? I know they even if one of the twins had downs we would still have had them. God gave them to me to love and knew that I could take care of someone so special. Sure it's hard but, we do it out of love. Maybe just by pass the test and trust in GOD. I know if I was having anymore I sure would. I wish you the best of luck. I know it must have been hard to loose a child. God Bless.Mom to twins with CF
Just to let everyone know, they sent my placenta in for testing after I gave birth. It came back that I had a severe infection of the placenta which caused it to detatch. I asked the MD who did the CVS if the infection occured at the time the CVS was done and she said "probably so". The worst part of it is that she continued to tell me if my MD would have caught the infection, that i could have been started on an antibiotic and continued with a normal pregnancy. Part of me wishes she wouldn't have told me that because I am furious now that they neglected to catch the infection when i was so sick. They kept passing it off as my placenta detatching. The MD knew i had an infection from all of the bloodwork they did. My mom kept asking her to put me on an antibiotic, but she wouldn't because she wanted to know "for sure" where the infection was before they treated me for it. I asked the MD who did the CVS what the percentage is of an infection occuring with the CVS. You've got it . . . 1%. That is my luck. A 1 in 3000 chance of having a child with CF and a 1% chance of getting an infection from a CVS. My husband and i are always that 1%. She has been doing CVS's for the past 20 years and i am only the 2nd person who has gotten an infection from it. Sometimes life sucks, but i have to continue to live for my son. I don't know what i would do without him in my life. Thanks again everyone for your comments.Jodi, Mom of Tucker w/cf