A few weeks ago we were told that there was a chance that Ollie has Cystic Fibrosis. This was found by a blood sample taken the day myself and O were discharged from the hospital. This, known as a newborn screening, is required by Alabama State law and is done on all babies. The blood sample is then sent to a lab where it is tested for many genetic disorders as well as allergies and other things. It takes two weeks for the test to come back and when it did Ollie's test was inconclusive due to the lack of sample. Although hers was "inconclusive", we were informed that her screening for CF was positive. We were then contacted by Children's Hospital at UAB that we needed to bring O in for a sweat test once she was a month old to confirm CF. (Babies w/ CF have large amonts of salt in their sweat.) We had high hopes that this was all a big mistake and everything would be OK after this second test. Well, after the trip to Children's Hospital, we were informed that O did indeed have Cystic Fibrosis. I am posting this announcement so that not only is everyone informed but because there has been many inaccurate rumors flying around town about her disease. I wanted our friends to not only understand what CF is, but to also be able to correct these folks who are sharing our private information and getting the details all wrong. It is hard enough to deal with this diagnosis alone.
Cystic Fibrosis is a genetic disease that causes thick, sticky mucus to build up in the lungs, digestive system and other organs of the body. The mucus can lead to chronic lung infections and difficulty digesting food and nutrients causing poor growth and development. CF is an inherited disease caused by a recessive gene. This means that a child must inherit two copies of a defective CF gene, one from each parent, to have the disease. One in 33 americans are carriers of CF. This does not mean you have CF, you simply carry one copy of a defective gene. When two carriers have a baby, there is a 25% (1 in 4) chance that this baby could have CF (meaning we both passed on a defective gene). John and myself had no idea that we were carriers of this gene (which was passed down from one of our parents) and have NO family history of CF. Mandatory testing babies for CF just started a year ago, which means some people who have CF were not diagnosed until they began having symtoms. These symptoms might not even show up until adulthood. Early detection is so important for leading a happy healthy life and with proper care and prevention life expectancy is around age 40 and is getting higher every year.
With all that being said, Ollie is doing great. We have started her on enzymes to help with her digestion and she has started taking vitamins as well. As she gets older she may need some sort of lung therapy to assist in the fight against lung infections. Besides this extra medical care, she will be a normal baby and child. She can play sports and do all the things that children her age can do. Of course we are upset that she has CF, but we are happy it was diagnosed early and treatment has begun.
We simply ask that you keep us in your prayers but treat Ollie, John and myself the same as you normally would.
Ollie has always been special, now she's just a little more special.
Thanks for listening and love to all!
.JPG)
