Noahâ€™s story of diagnosis:
Noah was showing signs of CF from the very beginning of his life. He was born 6.6 lbs and got as low as 5.13 lbs. We were going every week to get his weight checked at the pediatricians office, switched to formula, and was feeding round the clock but he still wasn't gaining weight. His pediatrician finally put a referral in for us to see a GI doctor.
When Noah was 4 weeks old we saw the GI and he admitted Noah into the hospital within minutes of our meeting. He said, "He won't make it if we don't admit him." Little did we all know that he had CF....
On April 4 I received a phone call from Noah's pediatrician letting us know his newborn screening results were in and that Noah had two gene mutations of Cystic Fibrosis. My response was, "Oh! So that is the reason he is not gaining weight." (I had no idea what CF was) Her tone changed and I could tell it was something way more serious. She said there are doctors who specialize in this for children and she would be getting me in contact with them and now there are even some doctors who care for adult patients.
Only some doctors...
At that point I realized that this was not good.
I hung up the phone and Allen and Grace came walking through the door at that moment. I told them and Allen said, "Wow!" and Grace had a bunch of questions.
Two days later we met those that would be on Noah's CF team and he had the sweat test done. I wish I could've taken a picture of that moment, but I just cried.
Thank you for helping us help the scientists.