Eve was born on the 1st of January 2006, 7lbs 9oz and cute as a button! She was the healthiest, chubbiest, happiest baby ever!! When she was 6months old, she developed a slight touch of pneumonia so her GP sent her for a sweat test, thinking she had asthma, to rule out Cystic Fibrosis. I remember talking to the CF consultant in the hospital on the day of her testing, him looking at her and listening to her health background and saying "in my eyes there is no chance of this child having Cystic Fibrosis". So of course I was happy with his professional opinion, but a week later I got a call from him saying he was so very sorry and could I come in and talk to him the next morning. I knew then that it wasn't good news.
My healthy, happy, chubby baby...before life turned into a nightmare.
I left the hospital, 19yrs young, thinking about how I was going to outlive my daughter. Like any curious parent, I made the dreaded mistake of "googling" cystic fibrosis....and thats when the tears came. "Life shortening", "constant infections", "medication", "life expectancy of 16"...this is what was appearing on the screen in front of me. I remember going over to Eve's crib, picking her up and just holding her and crying. I turned off my phone, stayed in my room and had no contact with anyone but my parents for the next 48hrs. I wasn't able for all the questions that were about to come. I just wanted to be alone with my girl.
I dont think I was ever so mad at God in my entire life! I was so pissed with him for doing this to me and my baby. I kept thinking, Im a good person, I go to mass, I say my prayers and yet you punish me like this!? I really couldn't understand why this was happening to me...what did I do so wrong?
The week after Eve was diagnosed, the CF nurse from Eve's hospital called with the genetic report results. She explained that they had found one common gene of CF, the DF508 and one other extremely rare mutation, 1898+1G. She then proceeded to tell me that because this mutation was so rare, it meant Eve had a very mild form of CF and that it wouldn't majorly affect her health. I was sooooo happy when I got this call, words can't even explain it. I remember calling my mother and telling her the "good news" and being so utterly happy!
But who would have thought that in just over 3yrs, I would get a call to say that they had got it wrong, very wrong.
This rare mutation didn't mean Eve had a mild case of CF, it meant that she had one of the most severe cases they had ever seen....
Your beautiful Eve is in our thoughts and Prayers. This disease beyond SUCKS! Keep up the good work Momma and enjoy every moment of her she is adorable. <3
ReplyDeleteAs you have discovered, the list of things that doctors don't know about CF is pretty long! Our son was 7 years old and they were sure it wasn't CF. He's almost 21 years old now. When he was 12 he had a lobectomy, too. He's definitely had his ups and downs and struggles. Eve is just adorable. Glad she's doing well.
ReplyDeleteShe def is as cute as a button :o)
ReplyDeleteAre you willing to post this on your blog? I'm trying hard to get out the word on CF so other mothers can celebrate the cure of CF instead of what we experienced.
ReplyDeleteLaRecea Tabor Gibbs
One of the most difficult diagnosis a parent can hear is CF. I know! My son was diagnosed in '64 and we were told he wouldn't live beyond 12, but he celebrated his 31st birthday and lived a full, amazing life in spite of over 80 hospitalizations
The NCFF has made dramatic discoveries since, but parents still must make difficult decisions whether to choose quality of life or quantity. It effects every member of the family and is not an easy decision.
NOT A WASTED BREATH tells the story of how one man refused to allow CF to destroy his spirit even as it destroyed his lungs. It is written in Todd's own words as he waited for a lung transplant, from a mother's viewpoint and 9 persons impacted his life.
Visit http://notawastedbreath.tateauthor.com and watch the two TV interviews "Todd Story" and "WKU News. You can order it from Tate Publishing, Amazon, and most major bookstore. For a signed copy, email me at larecea@nctc.com