Jill,
In April of 2004 I was in your exact position. We found out through amnio testing that our daughter would have CF. I had many of the questions you do (and more) and I know for certain that you have found the right place. I am working on a website to help expecting parents who have found out through prenatal testing their child will have CF. I want you to know that I am here for you and that i will be glad to answer any questions that you might have. You are coping with a great deal. Feel free to PM me or email me any time if you have need to vent or just find some perspective on what is going on.
1. CF will be your major focus for a while. Take time to inform yourself on the specific ins and outs of the CF gene mutations that your child will have. This will enable you to get a general picture of what to expect right after birth. CF affects every person differently, so what is happening to one child or adult with your child's same mutations might not happen exactly the way it is for them. If you have problems understanding the information presented (the reports from the tests that give the results) there are plenty of folks on here that can help interpret them and put them into layman's terms for you. This research and understanding will enable you to have some control over CF and will allow you to focus on your child and not focus on the disease.
2. Guilt is a hard one. My mother feels guilty and she's the grandmother to my daughter with CF. I am still working on the guilt thing. When I get it figured out I will let you know, I promise.
3. Many parents choose to stay home with their CF'er. I stayed home for my daughter's first year to help with basic immunity, but decided to go back to work full-time this past fall. Life has to go on for you and for your child. There are many on here that will tell you that germs are good. There are many on here that will tell you that germs are bad. What you are going to have to do is decide what you can live with. I decided to stay home because I didn't want to look back on her first year and wonder if I did everything I could to postpone the onset of any symptoms that she might have and when they develop. After the year (which was miserable for me) I found a day care that agreed to give medications if/when necessary and inform me of any major illnesses that might affect my daughter so we could pull her out if needed. I don't put my daughter in a bubble, but I do a little more to ensure that things are cleaner and Lysol-ed more often. We are all benefiting from this change, not just my daughter with CF. <img src="i/expressions/face-icon-small-smile.gif" border="0">
4. I've learned through all of this Normal is a myth and it is more a state of mind. You will just have to find your new normal. <img src="i/expressions/face-icon-small-smile.gif" border="0"> The biggest change I've found is that our relationships with friends and family have changed. If your child doesn't show symptoms immediately you will have to deal with people assuming that the diagnosis was wrong or that your child was "cured." We have learned that you can't change how people think about CF, especially if they don't want to change their mindset or become educated about it. Lots of folks live in denial. Sometimes you just have to let them live there and not worry about it any more. People won't know how to respond and people will respond inappropriately for what you want or need right now. Forgive them. They don't know that what they are saying hurts you. The inappropriate or insensitive responses in many cases are because they are unsure of what to say or do.
5. I believe the the quality of life of my child is much better because my daughter's CF center team knows what to look for and run comprehensive tests when we are there at our check-ups. My daughter is symptom free right now. Without putting her in a bubble and even though we are allowing her to be a kid, we are doing everything we can to ensure that she stays as well as she can for as long as she can.
These answers are just the beginning. Please feel free to email or PM me with ANY questions you may have about getting through your next 20 weeks. I will be glad to help you with gene mutation searches and more. Just let me know. Consider me your personal guide through this part of your journey. I'm still learning about what to do after they get here. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Take care of yourself, Jill. The love you have for your child will totally overshadow any fears or concerns that you have about his/her CF. I promise.
Emily
emily.wiegert@gmail.com
