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How Bennett Got Cystic Fibrosis

Thursday, October 8, 2009

We recently met with a Genetic Counselor to discuss why Bennett has Cystic Fibrosis.

Cystic Fibrosis is an inherited disorder.  It was explained to us that Bennett has two mutated genes, one from each parent, which gave Bennett CF.

Each mutated gene is a recessive trait, which means that if a person has a normal copy of the gene they will not have Cystic Fibrosis.  Only when a person, like Bennett, inherits two defective copies of the gene do they develop CF.

This means that we are both carriers for the disease.  We each have a normal copy and a mutated copy.  Our normal copy is dominant, so it masks the recessive trait.

Oliver, our first son, inherited at least one good copy of the gene (maybe two) so he does not exhibit any CF symptoms.  The odds any of our children will have CF is 25%, which we didn't know before Bennett was born.

Apparently 1 in 25 people of Northern European descent (which we both are) are unaffected carriers of the mutation.  Neither of us have had any Cystic Fibrosis in our families whatsoever so we did not even consider this as a possibility.  Unfortunately, both of us happen to be that 1 in 25 individual.  Who knew?

This helps us understand that although Bennett inherited these mutated genes from us there is nothing we could have done to prevent it and, once he was conceived, nothing that we would have known would have made any difference.

4 Responses to “How Bennett Got Cystic Fibrosis”

  1. Brian and Breck, I was reminded today of a song someone posted on FB a few months ago...I really liked it at the time, but through reading this experience from your eyes, it makes it so much more beautiful. I'm not usually a fan of just sending song lyrics, because I think it can be really empty and trite, but for some reason, this one just really hit me for you guys. It's called "What it means to be loved" by Mark Schultz...

    For five months and eight days my wife and I had waited
    Getting ready for our baby girl
    But when he called the doctor said I need to see you
    And could you come in soon
    Then something died inside of me to sit with him and hear
    The tests that said our baby may not live to be a year
    Then turning to my wife he said "What do you want to do?"
    And she said...

    I wanna give her the world
    I wanna hold her hand
    I wanna be her mom for as long as I can
    And I want to live every moment until that day comes
    I want to show her what it means to be loved

    So we spent each day, watching every minute
    And praying for our baby girl
    And I will not forget the way I felt that moment
    When she came into this world
    But they took her from the room just as soon as she was born
    And watching through a window I could see her holding on
    When a voice inside me said...

    I want to give her the world
    I want to be her dad
    I want to hold her close for as long as I can
    And I want to live every moment until that day comes
    I want to show her what it means to be loved

    I said everyday
    We've got to bring her home
    She's been out to prove the doctors wrong
    Oh and you should see her now
    She's as pretty as her mom
    And there's a boy at the front door waiting Just to take her to her high school prom...

    And he wants to give her the world
    Wants to hold her hand
    And someday she may get a wedding band
    But she's gonna live every moment until that day comes
    And we're gonna show her what it means to be loved

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  2. Dear Brittany and Brian, I don't think you will remember me, but I use to live in Minden. Your mom and Cindy Walker were the first people I met, when we moved there. You were with your mother, when she came by to bring me a basket of welcoming goodies. You'd just gotten a pine needle poked in your eye. I'm sure you don't remember all that, but that's when I first met you. I saw pictures of you in Cara Beth's wedding pictures and told Cindy Walker how much you look like your mother. Now looking at pictures of you with your husband and your precious new little boy, just makes me smile. I didn't know you had a son already, little Oliver. I'm sorry this is so long, but I just felt like I needed to visit a little. You and Brian are going to be wonderful parents. God did bless you with Bennett. He knew he was putting him in your loving care, before you did. He knew you would love and take care of him. Oliver will be a loving and caring brother. I know this is so much to take in and overwhelming, but God knew you'd be able to handle it all. I'll be praying for you always. You're so blessed to have such a good Christian family to help you and give you the support you need through your lives. Give your little boys a kiss for me. With love, Ann McCaa

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  3. How wonderful to see little Bennett in your arms, finally! Please know that we are continuing to pray for your family as you learn more about CF and what is ahead for Bennett. I am amazed at the depth of faith both of you display in facing this challenge. Here we are trying to encourage you, and you are encouraging us through sharing your journey. <>< Marsha Braswell

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  4. Dear Brittany and Brian,

    My sister, Colleen (John Butler's wife), sent your Blog to me and what a precious little boy God has given you to love and care for. Reading your Blog brings back a rush of fear and feelings of when my grandson was diagnosed with CF at his birth 6 1/2 years ago. The Doctor's and support staff at Children's Hospital in Seattle, WA partnered with our family to make sure we were well versed on CF and continue to do so today. The CF Foundation is such a wonderful organization that continues their research for a cure and have made great strides in the 6 1/2 years we have been intimately involved. Like my daughter and her husband, they likewise had no clue that they were carriers of the CF gene, and when they were told the chance of the baby having CF was only 25%, they felt pretty confident that he would not have the disease. We tend to believe that God gives these special children to only parents that can handle the challenge that is before them. So you were hand picked by our awesome God! Our grandson, Baylor, (now 6 1/2), is a healty, robust and all boy!!! The hardest thing, for us as a family, was to let him grow up as normal as possible. When he was younger he would say, why do I have to have "sixty-five-roses"? And our answer was and is that "God Made You Special". I find that most parents and families with kids with CF are extremely optimistic, encouraging, knowledgeable and have a lot of FAITH!!! Bless you and your little angel and know that you are in our prayers. Blessings to you and your family, Donna Ashley Shoemake

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