Hello everyone. My name is Shannon and I wanted to introduce myself and maybe get a little insight from those of you who are raising a child/children with CF.
I am 23 years old and my husband and I are expecting our 2nd little boy in the middle of March. When I was around 17 weeks pregnant, we went in for a regular ultrasound where the doctor found that the baby had a "bright bowel". What he told me was that it could be one of three things: I had bled (not known it) and the baby swallowed some blood, the baby could have down syndrome, or the baby had CF.
After doing research, I was most concerned about down syndrome as hubby and I do not know of anyone in our families with CF. I went in for AFP tests twice and both times the results were high. Since AFP levels with down syndrome babies are usually low and the baby had other things (nose bone), we pretty much ruled out down syndrome but now the doctors started talking about spina bifida. After the second ultrasound, about 3 weeks later, doctors said the spine looked great and that they would be able to catch something like 96% of spina bifida cases. Hubby and I had taken CF carrier tests and around a week later I received a call from the doctor saying that both hubby and I are carriers.
This took me totally by surprise as this was the last thing I thought this "bright spot" was all about. Ever since, I have been trying to educate myself as much as I can about CF. We are going to see the genetic counselor on Monday and I have many questions that I am hoping she can answer.
My biggest concern is with the first few years of life. Has anyone here gotten a diagnosis this early? I have been wondering about this "bright spot", whether it is a meconium illeus or what it would be. Wondering what I should expect in the first few months. I know that no one can tell me how bad this is going to be, but that's what terrifies me.
If anyone has any information, it would be greatly appreciated. Sorry for the long post.
Shannon
I am 23 years old and my husband and I are expecting our 2nd little boy in the middle of March. When I was around 17 weeks pregnant, we went in for a regular ultrasound where the doctor found that the baby had a "bright bowel". What he told me was that it could be one of three things: I had bled (not known it) and the baby swallowed some blood, the baby could have down syndrome, or the baby had CF.
After doing research, I was most concerned about down syndrome as hubby and I do not know of anyone in our families with CF. I went in for AFP tests twice and both times the results were high. Since AFP levels with down syndrome babies are usually low and the baby had other things (nose bone), we pretty much ruled out down syndrome but now the doctors started talking about spina bifida. After the second ultrasound, about 3 weeks later, doctors said the spine looked great and that they would be able to catch something like 96% of spina bifida cases. Hubby and I had taken CF carrier tests and around a week later I received a call from the doctor saying that both hubby and I are carriers.
This took me totally by surprise as this was the last thing I thought this "bright spot" was all about. Ever since, I have been trying to educate myself as much as I can about CF. We are going to see the genetic counselor on Monday and I have many questions that I am hoping she can answer.
My biggest concern is with the first few years of life. Has anyone here gotten a diagnosis this early? I have been wondering about this "bright spot", whether it is a meconium illeus or what it would be. Wondering what I should expect in the first few months. I know that no one can tell me how bad this is going to be, but that's what terrifies me.
If anyone has any information, it would be greatly appreciated. Sorry for the long post.
Shannon