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Our daughter Abigail Faith was born in July 2001. She was and is a beautiful
child who at delivery (and to this day) we thought was perfect. Unfortunately, in a whirlwind of events we found out
that she had a condition known as VATER Association (Also known as VACTERL). To us this meant an immediate surgery to correct
an imperveated anus and months of anxiety over what her future would hold given she was diagnosed with a series of spinal
deformities including hemi vertebrae and several sets of fused ribs. We never expected the arrival of our daughter to bring
the arrival of the need for dozens of x-rays, MRIs, measurements, hours in waiting rooms to meet new doctors, and millions
of tears over the fate of our daughter and concerns that her life would never be "normal". Once the initial shock was over
our parental instincts took over and we set out to find the "answer" to her complex spine deformities. We sought out at least
5 opinions to determine the best way to approach her issues and we found that we were given 5 different opinions with 5 various
approaches and outcomes. It seemed that none of the experts could agree and so how were we as parents supposed to know what
to do?
We were very fortunate to meet a doctor that had heard of the programs
that Shriners had to offer. We were referred to Shriners Hospitals for Children in Philadelphia to meet with Chief of Staff,
Dr. Randall Betz. Upon meeting with Dr. Betz we found the person we felt we could entrust the
care of our daughter to, and agreed to take part in the investigational study for the Titanium Rib Implant/VEPTR procedure.
Actually agreeing for our daughter to have surgery was a painful, but necessary,
decision for us to make. I did not know how we would get through it as a family, but I knew we had no choice. Somehow, almost
3 years later, I can say we have "survived". Even though our daughter has not been "healed", she is leading a normal
life and that is our focus; I never thought it would be. She has undergone what we hope has been the most involved surgery
she will need (we really don't know what the future holds) and a number of additional follow-up surgeries. Abby will
need surgery every 4 to 6 months initially and then hopefully that will shift to a longer duration of time in between as she
grows to her teenage years; I don't know what is ahead for Abby, but I have a sense of relative peace about her situation.
I am not sure if that comes from having already gone through a surgery with her and so the anticipation over what to expect
no longer exists, or if that peace comes from a higher place. I just know that even though she still has a long road
ahead of her, I feel that we have crossed the bridge and gotten to the other side, whatever that will be. I think the
greatest realization for me was that our life, her life, did not revolve solely around her doctor's appointments. I used to
feel that all I did was schedule and wait for appointments; but a few weeks after her initial surgery, I received a reminder
to call and schedule a follow-up for her, but instead of doing that right away like I always had, without even realizing it
I set it aside and had to be reminded to follow-through with it. When later I realized I had not yet scheduled I immediately
felt terrible about my error, but soon reflected what it really meant for me. What it meant was that living "life" was taking
priority over "Abby's back" and for us as a family that was a huge deal.
If anyone would like to contact me directly to ask questions please feel
free, my e-mail address is kcahayes@yahoo.com
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