The births of each of my children were text book, picture perfect. No complications, no c-section (not that a c-section birth cannot be perfect), nothing. Everything went exactly as it should have. I have been able to breastfeed each of my children well into their second year, and they each took to it fairly easily from birth. My point in all of that is that I have had the kind of “baby” experiences that a lot of mother’s dream of, and I feel very, very blessed for that.
When Ashton came, it was just a normal birth and get accustomed to the new baby process. My son did have a stomach virus our second night home, no fun! He also had to have tubes in his ears when she was 9 days old… no fun either. But she was growing VERY well, was nursing well, and was all around a healthy baby. She was a December baby, and she occasionally had a runny nose. She went to her 3 days and two weeks check ups and had glowing reviews. She was the perfect picture of health!
So, I was NOT concerned when the pediatrician called and said that one of the tests done from the heal stick before she left the hospital showed something irregular. She had tested positive as a carrier for Cystic Fibrosis. She explained to me that hundreds of kids were testing positive as carriers due to the fact that they were now testing for it at birth, but only about 2% of those actually have the disease. She also assured us that Ashton was showing absolutely NONE of the symptoms characteristic of CF. We were to go to Arkansas Children’s Hospital and have a sweat test done to determine if she actually had the disease.
Over the next few days we of course prayed and researched and were absolutely convinced that she could NOT have this. She had NO symptoms, it was EXTREMLY rare, and neither of us had anyone in our families that had ever had the disease.
During the testing we spoke with several people that told us that in the 6months our state had been testing at birth, there was yet to be one that had tested as a carrier in the newborn screening that actually had the disease, other than those that already had some of the other symptoms that would have caused them to check it out anyway. We were a-ok.
Until the lady came in with the results... We could see it on her face. She was shocked, we were shocked… everyone was so shocked they wanted us to come back in two days to retest.
It wasn’t until on the way home that evening, after all those months, that I remembered the “but”…
If you want to know more about the whole CRAZY situation that ensued after and what I consider to be the miracle of how healthy my baby girl is, start at the beginning here.