To the original poster -
I am not going to stand in judgment. Yes, it is difficult for me as well as the others to hear that you are thinking about terminating a second fetus with CF. Before you make this final decision, I want to make sure you have an accurate idea of CF. So, I am going to take my story as an example. I carry 2 deltaF508 mutations (which are considered severe mutations.) I was born with meconeum illeus, so I needed surgery as a newborn. I have always gone to school and done well. From the age of 8 to 12, I was in the hospital annually for a 2 week period to receive IV antibiotics. I was in the hospital more frequently during my teenage years, but now I am back to annual IV antibiotics. It was somewhat disruptive, but people with CF get used to it. From time to time, I have had some digestive problems that require treatment, but never surgery. I take pancreatic enzymes daily, again just routine. A year ago, I graduated from college with a bachelors in biology. Now, I am in graduate school for genetic counseling. This summer, I am getting married. As you see, I have had a relatively normal life. Yes, CF has had a huge impact on my life, but not only in a bad way. I am a stronger person from having dealt with this my whole life, and I would argue that my parents and siblings are as well. Given that your husband's mutation was only picked up on Ambry screening, this is probably a mild mutation (emphasis on probably.) Your child would probably have a somewhat milder course. There are people on this board who have never been in the hospital and have lung function in the normal range. Of course, there are others who are doing poorly. That is the nature of the beast.
Yes, you have been unlucky. You rolled the dice twice and lost. God isn't punishing you. So, you might want to consider preimplantation genetic diagnosis or adoption. I only have one last thing to say. Don't sell yourself short. Everyone of us has incredible inner resources. We don't know about them until we have to tap into them.
Try to understand the people on this site's reactions to your post. It makes us wonder, what if our parents had known beforehand and made the choice you have. Regardless of our CF, we are people first and foremost. First, I am a daughter, sister, fiance, friend, and student....then I am a patient with CF. Please consider what I have said and make the choice you feel is best for you and your family. If I can help you in anyway, please e mail me at mar_md@yahoo.com
