Trigger: amnio diagnosed cf positive

In 2010 my husband and I found out we were carriers. We were trying to get pregnant and were screened. Because we both screened positive as carriers we were sent to a fertility clinics to get info on ivf/pgd. We didn't know we were already pregnant. Our first son was born after a complicated pregnancy and premature delivery. He tested negative in new born screen for cf and was declared healthy. Fast forward July 2012 we found out we were pregnant again had an amnio at 15 weeks and our second son was also part of the sacred 25% that didn't carry either gene. Now here we are 2015 and pregnant with our third. We found out after the amnio returned that our baby was positive for both mutations that she is our first girl. We are heartbroken over the diagnosis. But we are now faced with carrying her to term or termination. I carry DF508 and my husband is 711+g1>t. What we know now for certain: she has CF, she will be pancreatic insufficient, and that at this point her intestines are brighter than bone on ultrasound and have shown some dialation making merconium illieus a concern. We've talked to 2 genetic counselors, 2 pediatric cf teams, talked to a Chaplin, watched the videos (good, bad, and ugly) read the forums on baby center, cried - a lot. We are afraid for her how long will she live and her quality of life, being our youngest child and our only daughter, how much will she suffer, how healthy will she be over all, for our boys will they rally around her or will they ...
Source: Cystic Fibrosis Families Forum - Category: Respiratory Medicine Authors: Tags: Families Source Type: forums