The Beginning of Our Spina Bifida Story

We are less than two weeks away from a major surgery for our daughter, Butterfly. We are already asking for prayer and may be including updates on her status post-surgery on this blog. Most people who would take the time to read this blog know us personally, but may not have known us at the beginning of our adventure with spina bifida. Today, I decided to go back and read again the e-mail we wrote when we announced to all we knew and loved about the extra-special qualities of our unborn baby (That e-mail is below). I hadn't read it in more than five years and it still made me cry. All the emotions that we felt, the fear, the joy, all intermingled... we are feeling some of those same feelings presently as we anticipate this surgery. We are thankful that now, we have an even surer faith in the goodness of our God because we have experienced the many, sometimes quiet and sometimes miraculous, ways God has provided for us in this journey. Here is the beginning of that story:

October 29, 2002

Dearest family and friends,

We are writing this evening with news which we have
previously neglected to tell. It is with hopeful
hearts we write of the wonderful gift of our third
baby, a little girl, who is now minus 20 weeks old. It
has been determined through ultrasound technology that
she has spina bifida, which is a defect in her spine.
Possible complications include fluid buildup in the
skull (which is drained through shunts) and nerve
damage which can affect walking and bowel and bladder
control.

We will be leaving for Vanderbilt Hospital in
Nashville November 7 to consult about an in utero
surgery that might help minimize the above
complications. Many of you will remember our friends
Jason and Susan have a daughter Anna, who
was helped with this surgery. Their story is
wonderfully told on .....................................

At our best moments, we feel so privileged that God
has chosen us to parent this very special little girl.
It also pains us to think that she might suffer in her
life in any way. We are praying for a miracle in her
life and ask that you pray for her and us as well.
Specifically, we are praying for complete healing; if
not that, then the minimal effects of spina bifida for
her life. We are praying that God will guide us
through parenting a special-needs child and that her
life will be full of joy. We also ask for your prayers
regarding the decision we will be making regarding the
in-utero surgery next month. We pray for God's very
clear guidance so that we will be absolutely certain
of the path we must take. Also, pray for E and
L who will, for the first time, not have mommy and
daddy overnight (and potentially for up to 10 nights
in a row if we opt for the surgery). My mom will be
watching them here in Pittsburgh and will need
patience and energy as well as a great sense of humor.

We would be remiss if we didn't acknowledge the many
ways God has already blessed us in preparing for this.
For example, not only did we pray with Jason and Susan
over Anna, but our next door neighbors here in
Pittsburgh have a five-year-old daughter with spina
bifida. God has always been and will always be
faithful in the lives of those who love him and we
certainly do!

We will keep you informed of any developments and
please know that we will try to answer any questions
you may have... there is just so much that we don't
know yet ourselves.

These verses have been given to us several times in
the last week and have brought us comfort. So in
closing, "Trust in the Lord with all your heart; do
not depend on your own understanding. Seek his will in
all you do, and he will direct your paths." Proverbs
3:5-6

Love, B and Amy Smith