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Thread: Diagnosed during pregnancy

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  1. #1

    Diagnosed during pregnancy

    Hello. My name is natasha, i am 23. I am currently 37 weeks pregnant and after having an amniocentesis late on due to the baby having bowl problems. He has been diagnosed with CF. Wandering if anyone else has been in the same situation? Or can anyone give me any advice, as a new mum to be for the first time, along with the baby having CF. (His bowl will be looked into further after birth, potential surgery is required as his bowl is dilated with loops and fluid) Anything will be much appreciated! Thankyou.

  2. #2
    Super Moderator
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    Apr 2006
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    While it didn't show up on the ultrasound, my son was born with a bowel obstruction caused by meconium ileus. In his case he required surgery to clear the blockage and spent a few weeks in the hospital while he recovered. He would've gone home after a few days, but developed an infection and needed IV antibiotics. While we were in the hospital we learned how to care for a child with cf -- met our CF doctor and learned how to give him enzymes to digest fats/proteins and to do chest physiotherapy. We just took it one day at a time. Today he's a busy teenager.

    I know there are others on this site whose babies didn't require surgery and were able to pass the blockage. Being that you and your doctor are now aware of the potential issue, IMO a plan should be put in place as to WHERE the surgery will occur if it is needed. Mainly because in our case the surgeon who normally does this type of surgery, was out of town and the hospital had to make arrangements for this to be done elsewhere.
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

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