Friday, May 14, 2010

How Cystic Fibrosis entered our household the second time

As explained in What is Cystic Fibrosis, we knew after Ethan Sky's diagnosis that there would always be a 25% chance of our future children to have Cystic Fibrosis.
Upon getting married, my hope was to have at least 3 children and Joshua was getting closer to the desire of having more than 2 children:) Our decision, after months/years talking and praying, was if our second child had Cystic Fibrosis, we would stop. If that child came up negative we would try for a third and then stop whether that child tested positive for CF or not.
Why did we even consider having a child, knowing about that 25% chance??? We felt God guiding us, we saw the need for Ethan to have a brother or sister....and to be honest, 25% seemed so small:( In 2006, it finally looked like our finances would be getting better (which the turn in economy proved that wrong), so we said lets start trying for another child.
 We got pregnant immediately.
September 2007 the best little brother in the world was born:) We went through a lot of trouble just to get Caleb tested for Cystic Fibrosis. No doctor wanted to take responsibility for him and for the test. It was simply ridiculous.
  After Caleb was 2 weeks old, I finally got health insurance to approve the Genetic Blood Test (AMBRY.) What a relief. We got the testing approved in Arizona, but we were living in Silver City, New Mexico and that is where we had the blood work done. The doctor ended up taking the blood out of Caleb's groin area and it was not a pretty sight watching him search around with a needle for a vein!!!
  Usually the test takes about 4-6 weeks, so we were just waiting. During that time, Caleb was nursing so well and he was a chubby, happy kid. The only thing that worried me, was that you could see that his tummy hurt, especially at night when he was sleeping.
We ended up going into the very small town doctor's office again, for flu vaccines and the doc walked in with a piece of paper. He said he got the results. He said Caleb is NEGATIVE for Cystic Fibrosis.
He asked if I wanted to call anybody right now to let them know and I replied no that is okay. The doctor ended up walking out of the room to get something and so I looked at the paper. I read it a little and it sure did look like it said that Caleb was positive, with 2 different mutations.
  The doctor came in moments later and his face was pretty pale and basically said he just grabbed the paper out of the fax machine and must not have read the whole thing. YES, it looks like he is positive for Cystic Fibrosis. It took all I had to keep it together until I got out of the doctors office.
 Upon getting the kids strapped in, I got in the drivers seat and just bawled. For a few minutes, my world was wonderful and then it came crashing down. Days later, I called up the CF center in Phoenix, they wanted to do a sweat test on Caleb, because there was a slight chance that he was just a carrier (I will explain more if you are interested) NOPE, the sweat test was definitely positive. Sweat test number 2 confirmed the diagnosis also. SO... no more biological kids for us, but maybe some day my hubby and our finances will be at a point where we can adopt or foster other children:)

1 comment:

  1. Hi Melissa. Thanks for all your updates. It breaks my heart knowing you are going through this and I will pray for God to give you strength. You are so amazing! I do think about you and your family and want to ask you some questions. My sister will be moving to Hawaii soon and I think it's the same area where you guys are. Bye for now. Michelle Davies (from GLC)