Nov 02, 2009
I'm writing to you from Childrens Hospital, unfortunately to report that my 4 month old twin daughters have been confirmed to have cystic fibrosis.
Many of you have followed our story as it unfolded,, from the intestinal blockage which was found in utero at 24 weeks. then found out i am a cf carrier but my husband tested NOT to be a carrier (it takes TWO faulty genes to have cf, one from each parent) then at birth the babies were premature (30 weeks) and one had intestinal surgery at 2 pounds and we sent her blood off for extensive cf testing,,, then both babies were confirmed to have ony one gene, carrier status only. Problems persisted in one of the girls, severe failure to thrive, feeding intolerance, etc so I moved to a larger hospital for further testing. Sweat tests done a little over a week ago confirmed my fear,,, both have cf, and my husband carries a "previously undiscovered" mutation. Which is why it never showed up on any of the tests.
Both girls were immediately admitted to the pulmonary unit of the childrens hospital and found that their lungs & airways show signs of airway disease consistent with cf & started on breathing treatments & digestive enzymes & now we're in "swing into action mode" and determined to do whatever it takes to help these girls live healthy normal lives as much as possible,,, as we wait on a cure.
Will update again at a later date.
Love & Hugs,