13 May 2012

CF Education Day at Children's in Dallas, Part 1

A few weeks ago, I was able to attend our CF Education Day at our clinic, Children's Medical Center in Dallas.  Brian was studying for Pre-Lims so I had to go along but I'm so glad I did.  I thought I'd write a bit about what I learned in order to share with others who couldn't be there.  The topics were all pretty interesting.

The first was "Pregnancy and CF: The decision to have a child.  What are your options?"  The speakers were Ali Guerami, MD and Matthew Welner, MD.  Unfortunately, since I was coming from Waco, I missed this session.  I believe it was mainly about CFers having kids.  But I honestly don't know.  I am working with Barbara, our social worker at our CF Clinic to see if I can get the powerpoint slides.  If I do, I'll post here too.

The second session was "Having and Raising Children."  The panel was made up of four or five married adults that have CF and their spouses.  This was tremendously interesting to me.  The people who sat on the panel were about my age and they didn't even look like they had CF!  The families all talked about the challenges they faced with having children (mainly the fact that they had to use IVF to get pregnant and how they cope daily with caring for little children and their Cystic Fibrosis).  But it was incredibly encouraging to see people with CF can have a family - not only that many live long enough to do so but that they can, in fact, care for themselves while caring for their children.  (Ronnie Sharpe and Jesse Peterson are two of many young adults with CF I have met online who have personally experienced having children while having CF just this year.  Ronnie and his wife had his first daughter using IVF.  Jesse and his wife have just begun fostering children.  I have really enjoyed reading about their experiences online.  Their stories remind me that many people with CF are finding ways to live out their dreams of a family.)  I am so thankful that we have the technology these days to help those with CF have families.

**For those who don't know, 98% of men with Cystic Fibrosis have incomplete or missing vas deferens, which connects the testes to the ejaculatory ducts of the penis.  Men with CF have sperm and can have an organism, they just can't get the sperm to the right place without assistance.  Bennett will most likely find this is the case with him too.  While we won't speak to him about it until one day when he is old enough to understand this information, for him to have a child, he will most likely have to use In-vitro Fertilization (IVF).**

The third session was called, "The Siblings: What about me?"  It was lead by Heather Bensman, PsyD and Vicki Kelley, MS, CCLS.  I was very interested in this session since we have seen Oliver have trouble adjusting to the trauma of having a sick brother.  At the beginning of the session, the speakers listed several of the feelings that many siblings of those with CF often feel: guilt (for not being sick), loss/loneliness (for lack of attention because they aren't sick), anger/resentment (because they don't get as much attention), anxiety (because their sibling is sick) and embarrassment (because their family/sibling is different).

My favorite part of the "Siblings" session was when the speakers talked all of the positive aspects of being a sibling of a child with Cystic Fibrosis.  This list is something I will keep close for years to come as I try to parent the sibling of a child with special needs.

Some positive aspects that the sibling of a child with CF may potentially gain include:
* maturity (because the child must face serious life/death issues faster than their peers would naturally)
* an extra level of loyalty (CF siblings are often very loyal to each other; to protect and help each other)
* insight
* empathy for others
* advocacy (siblings of those with CF often learn how to advocate for other people as they are involved in CF Walks and raising money for a cure)
* vocational opportunities (siblings of those with CF may see a greater need for doctors, researchers, nurses, child play therapists, etc. because those people are influential in the life of their family)
* tolerance (siblings of those with CF may confront the issue of "everyone is different - every person in every family is different" sooner than their peers because they see this in their family)

Another thing I really loved that the speakers shared was how, as a parent, I can use my children's CF experiences to encourage my both of my children:

The speaker said,
"When your child with CF or sibling is unhappy and feeling blue, this is not the time to use their CF experience to encourage them.  But when your child with CF or his/her sibling is feeling good about himself or herself, (such as if they make the basketball team or make an A on a test) you could say,

"You know, I bet all of those blood draws you have gone through have helped you to... (whatever the child is proud of)" or

"I wonder if all of that extra responsibility you've had with having to get up early and take care of your medications has helped you prepare to... (whatever the child is proud of)."

I loved this - thinking about how I can use CF to encourage my children.  Despite that their experience with CF is painful and challenging on, it may help them build strength in areas they might not otherwise have done so.  This doesn't invalidate the negative experience but can be a reminder that even negative experiences can be used in a positive way.

I'll share about the last session in my next post...


  1. Hi there--I'm a 34-year-old woman with CF in Dallas. I am thinking of attending the CF education day for the first time this year. I googled it and your blog popped up! Could you tell me what it was like for you?

    1. I find CF education day a wonderful resource. It's great to learn more about Cystic Fibrosis and the newest medications available improving lives of those with the disease. I hope you will experience it first hand to find if it is something from which you can benefit. Good luck!


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