Hello, all, first posting, I have some experience in this topic. First son, Cordell, was born 12 years ago, uneventful pregnancy except at the end when it was harder to breathe, a few courses of IV antibiotics. Cordell was healthy and me too. I was single mom for 6 years, got married, underwent gene testing for my husband to see if he was a carrier and he wasn't.
So, after 2 years of marriage, FEVs above 70, used natural family planning to conceive second child Aiden. I was very sick from the start of the second pregnancy, catching colds and coughing so much for the entire pregnancy, in the hospital starting at 24 weeks until my condition deteriorated and I had to be put on a ventilator when I was 29 weeks, 3 days pregnant. This meant the baby had to be born prematurely, nobody knew how it would turn out for him or me. Aiden was born 3 lbs 5 ounces and healthy, only on vent for 12 hours, amazing miracle, praise be to God! I did not fare so well, and was ventilated for more than 3 weeks, was not expected to live at all at some points and given a 50/50 chance that I would ever be without a ventilator to help me breathe. By God's grace, I also defied the odds and made it 3 and half years later, I'm off a ventilator and waiting (21 months so far) for a double lung transplant. I went home 2 months after Aiden was born and have had multiple complications but all pale in comparison to the great joy of having Aiden has a member of our family. By age 2, he caught up to all the benchmarks and standards of a normal 2 year old. He is thriving and my inspiration to the next step of becoming a lung transplant recipient.
I hope and pray when you read about my experience, you notice two things: <b>1. miracles still happen</b> and <b>2. Cystic Fibrosis</b> (although it has made me who I am today- I wouldn't be who I am without it) <b>is a disease that is unashamedly thoughtless and careless, not at all predictable or dependable even in pregnancy</b>. My doctor had no reason to think I would have all the problems I did when I got pregnant because I was doing pretty well. By the end of the pregnancy, my FEVs were 30 and they didn't go back up.
Now, take it for what its worth, but here's my advice..... One part of my second pregnancy that I wished would have been done differently is that I wish my OB/GYN and my pulmonary doctors would have communicated a lot more and been more team players than they were. They were comfortable talking to me but not each other and I suffered for it. Make sure you have a top-of-the-notch CF doctor that supports you being pregnant and is aggressive in treating you all the way through. Also, make sure you are aware of every detail of your health before you get pregnant, if possible. Get a bone scan, diabetes testing, MRI/catscan of chest, etc. This is important because pregnancy limits the drugs you can take and limits the treatability of those conditions. For example, some CF centers don't routinely check blood tests (called IgE testing) to diagnose Allergic BronchoPulmonary Aspergillus (ABPA is a condition which may effect up to 10% of adults with CF). To my knowledge, it is difficult to adequately treat this condition during pregnancy so you would want to plan accordingly. That is my two cents worth, based solely on experience.
Sorry so long.
