More than one CF child and echogenic bowel/MI question

[sdavis227]

I am nervous. We are expecting another child in March and we go in later this month for the anatomy screen. I know I am getting ahead of myself but was just wondering how many of you (with more than one child with CF) experienced an EB or MI issue with both children.

I am not doing an amnio so will not have a definite on a CF diagnosis or not until after the baby is born.

I would love to hear anyone's personal experience with this!! Thanks

 

[Aboveallislove]

Shannon,

I don't have anything on point but just wanted you to know I'll keep you, your family and your baby in my prayers. I can imagine the worry and uncertainty. Sending you some hugs.

 

[sdavis227]

Thank you

 

[ajlindsley]

Hi Shannon: I have 3 kids, my youngest 2 have CF. I don't remember the ultrasound technician saying anything about my daughter (1st one with CF) having echogenic bowel. We did not know we were carriers of the CF gene so we didn't know to look for it. My son(2nd one with CF) definitely had echogenic bowel. It was so obvious on the ultrasound. I am thinking that if my daughter had had it we would have seen it. So my point is that they can have CF without having echogenic bowel. My son with the EB did not have MI. He was able to pass the meconium on his own.

 

[ehtansky21]

WE have 2 with CF!!! We knew the second could have CF. We did not do the amnio. We did do an ultrasound a month before his due date to check for MI.
The biggest things I would suggest, is look into getting this child life insurance!!! We were able to sign a life insurance plan on our second son the day he got home from the hospital. It is a plan that will grow with him and they will never ask any health questions. I had all the paperwork done prior to his birth and then just had to sign the papers after he was born.

blessings,
missa

 

[sdavis227]

Thank you guys. I guess I just need to not get my hopes up if the ultrasound comes out okay in a few weeks. I wish there was a way to know without putting baby at risk - I am so much of a worry wart.

Missa - did both children have EB/MI?

 

[ehtansky21]

Shannon,
Neither had eb/mi....my first was diagnosed due to failure to thrive and second was diagnosed with Ambry testing and sweat test...

 

[MOM247]

Hi there,

My 5 year old was born with MI. During my 2nd pregnancy w/the knowledge there was the chance of CF, I had monthly ultrasounds. I also refused any testing. It was a loooooooong 9 months & 3 weeks for the test results, after the baby was born. She was negative. However during all those ultrasound we had one that showed a large bowel, and were told that it was a concern. A month passed they did another ultrasound and it looked fine. It was all very scary;( Please talk, talk to your family & friends about your concerns. I tried my best to put my brave face on it, but I should of let it out more. Nobody expected my tears, and anger when we got #2 results. Everybody wanted to celebrate w/us that #2 didn't have it. It was too much for me, because my little boy still does. Made me very angry. Sorry off the point.

I wish all the best,

Sarah

Mommy to Johnny 5 w/cf and Bailey Elizabeth almost 3 no/cf

 

[sdavis227]

Thank you Sarah. I am more of a pessimist when it comes to these things and my hubby is more of an optimist - so I know (even though he will listen) that he doesn't really like hearing my negativity towards this subject. I know in my heart that things are meant to be and will be okay either way but of course I am scared. We thought we were done after having our child with CF but went back and forth with it. We finally decided not to try and not to prevent it (it took us a while to conceive Parker). Fast forward about 3 years and here we are. Happily expecting but I'm of course looking at every little detail hoping to somehow figure out if this new baby will have CF or not without doing an amnio (I know, I'm nuts)

Thank you for everyone's replies. It means a lot to be able to ask a silly question and still get awesome responses