I am a first time mommy to a beautiful little 3 month old girl named Rosalie. She was diagnosed with CF while i was 16 weeks pregnant via amniocentesis. I have been nothing but terrified and depressed. it has gotten better and i have been more used to it but so far all she is getting is vitamins, enzymes and Prevacid. Reading all the blogs and post on Facebook just make me want to cry. All me and my husband ever wanted was a big family with a bunch of kids and now we don't want anymore children because we are scared. All i see is terrible things about people with CF and how they suffer and die pretty young. Is there anything i can do to feel better and be stronger for my little girl? Please help. Sorry about rambling on...
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
new mom to CF baby girl with double DeltaF508
- Thread starter Drubil85
- Start date
Our son was diagnosed a few days after he was born. All we knew about cf was what we'd seen on an ER episode. We we worried ds would be the lonely sickly child, in and out of the hospital. Our doctor called up to the cf floor and had a teen come talk to us, she looked normal, was normal, was just in the hospital for a tuneup. We got into a routine with cpt, enzymes, meds. He did great. Healthiest baby at daycare. Today he's a busy 10 year old, goes to school, active...
brad.johns
New member
I know how you feel. When I was diagnosed 42 years ago my parents felt the same way. However, you should know that in today's world it is not that way anymore. We are much closer to a cure now than we have ever been before. Hopefully in the near future there will be medicines available for us who have the 508 defect that will significantly increase our life expectancy. The median age in my lifetime has gone from the age of 9 to now 37 so please do not be discouraged. You found out before your baby was born so you have been treating since the beginning. Some go years before they are able to treat the disease properly. As a parent you are doing all that you can do!
G
Guest
Guest
Hi there,
I completely understand the feelings you have described as I felt so much fear and anxiety when my Rachel was born nearly 20 years ago now. If only I could have seen a snapshot of my beautiful, healthy, accomplished adult daughter. Just take each day at a time and live it completely. Enjoy your precious daughter and don't let thoughts of what might happen steal your joy. Best wishes to you and your family
I completely understand the feelings you have described as I felt so much fear and anxiety when my Rachel was born nearly 20 years ago now. If only I could have seen a snapshot of my beautiful, healthy, accomplished adult daughter. Just take each day at a time and live it completely. Enjoy your precious daughter and don't let thoughts of what might happen steal your joy. Best wishes to you and your family