Was your baby screened for cystic fibrosis at birth? How did the screening effect you and your child? Did newborn screening lead to your child's CF diagnosis, allowing him to start treatment before the inevitable complications began to appear? Did your child have a false positive screening that caused you undue anxiety? Did you find out that your child is a CF carrier? Whatever your experience, we want to hear from you. Please take a few moments to share your story.
- My daughter was diagnosed in the NB Screening(she was 6 weeks when we found out). Even after the sweat test,we were in complete denial but attended the Cf clinic every 2 weeks.Every appt she was reportedly healthy-until my little girl was eating every 1/2 hour, had poor wieght gain, and was in severe pain.The Dr started her on the enzymes.We were so scared to try them because deep down this would mean she really had it.We did it because we knew the Dr's knew best.The enzymes started helping within 2 days. It was a releif and devastation all over again. Our daughter takes enzyme's with every meal and has had no lung issues as of yet.Even when we were in denial we were diligent with her care,and we still are. We are thankful for finding out early,maybe we can delay some of the early symptoms because of preventive actions(handwashing, therapy, etc). But everyday I wait for the day when her breathing is laboured. I cringe whenever she cough's as I tell her "good job!".
- —Guest guest melanie
- When my daughter was three weeks old, she was diagnosed with Cystic Fibrosis through newborn screening. We were confused and denied the diagnosis because we were told my husband was not a CF carrier. After visiting the CF clinic for the first time, we quickly realized it was a blessing in disguise. Until then, she had not been gaining weight and was labeled "failure to thrive". She began to thrive soon after by taking pancreatic enzymes. Her father and I feel that newborn screening has given Hannah the best opportunity for survival. Research shows early diagnosis and preventative measures increase patients' life span and quailty of life. We are determined to keep Hannah healthy until a cure is found and have been since she was three weeks old, thanks to newborn screening.
See a photo and learn more about Hannah at http://www.cff.org/Great_Strides/HannahFazzari
- —Guest kgfazz
- My daughter, who has Multiple Sclerosis, because she is in her early 30's had undergone the genetic testing during her pregnancy. She was relieved to know that her baby did not have Down's syndrome or Spina Bifida. When her son was born she was not aware that there were tests done on newborns now that were not available years earlier as she also has an 11 and 12 year old. She was so happy with her handsome and happy baby. However, when he was 6 weeks old she was called into her Doctor's office and told to go to Sick Children's hospital the next day to check for CF. She was totally shocked as no one in her extended family or the father's had any knowledge of anyone having this disease. My daughter was devastated and had the two older children checked. As they has a different father they did not have the disease or were carriers. Happy to say that although the little guy has to take enzymes he has gained weight and is healthy. The early diagnosis has us confident he will thrive.
- —Guest Diane
Thankful for newborn screening!
- I am the mother of 2 children with CF. My daughter is 3, my son is 6 months. My daughter was not diagnosed until she was 9 months old because our state did not do routine screening yet when she was born. She suffered terribly during that time. She only weighed 10# at age 9 months and she was always sick and in the hospital. She's doing great now, but I hate that she was so miserable for so long. When my son was born last year, he was screened for CF and like his sister, tested positive. He started going to the CF center right away for treatment. He is growing well and doing great, and he hasn't had to spend one day being miserable like his sister did.