80% Relieved

I spent all last week researching, panicking, and have random crying spurts. I called my friend Beth (of Beth and Danno in the Virgin Islands). I was finally ready to embrace the worst case scenario. I wanted to hear all about what their life was like with a baby with CF. I was bracing myself for a very difficult conversation. Surprisingly, her words were very positive and encouraging. Her knowledge and strength showed me that the worst case scenario wasn't that bad after all.

I called my pediatrician to further discuss his medical history. I reminded him that he had never had many of the symptoms commonly associated with the condition (respiratory problems, pneumonia, greasy stools, etc). He informed me that some of the items in his medical history in fact HAVE been associated with cases of CF (ear infections & constipation). There are so many random conditions that are associated with CF that ANYTHING he's ever had could be a symptom. Great! To make things worse, he had a random throw up episode in the middle of the night. Weird! My kid hasn't thrown up since he was 'spit-up' age. I was up all night researching how throwing up fits into the cystic fibrosis puzzle. I later found out that my pediatrician used to run his own CF clinic. Might he be a little quicker to try to find a CF diagnosis? I think so. I was in the hairdresser chair having my hair colored during this pediatrician conversation, and I was absolutely bawling at his lack of optimism. My hairdresser is a good friend, and one of the most optimistic people I know, so I was glad to have her support after that awful phone call.

The next day Beth called me with a revelation. She informed me that the newborn screening for CF is a required test in the state of California and has been for a couple of years. He HAS TO have had this test. Now all I need to do is find it. That was not so easy. I called hospital records where he was born...no record of it. I called the pediatrics unit at the hospital...no record of it. I called the pediatrician(s)who treated him at birth...no record of it. Now I am pissed! This test is required in the state, and no one wants to be accountable for where the hell it is. After an entire day of going from office to office, Shane's mom figured out that all of the CF screening records for California babies are housed at Harbor General Hospital in LA. I called and had them faxed to my pediatrician. Low and behold...he is negative for the Cystic Fibrosis gene!!!! I am so unbelievably relieved.

The newborn screening checks for 80% of types of CF, so we are still going to have the sweat chloride test, but for now we can breathe a little easier. I am so grateful to Beth for all of her support. She was very happy for us to hear that he was negative. They live 3,000 miles away so there isn't much that I can do for them from here, but Cash and I will take every opportunity to contribute to the furtherance of CF research. It is because of proactive informed parents like her that CF is no longer a death sentence.