About Me

United States
My fiance (Joe) and I (Caytie) just delivered our third child. We have a son named Dustin, age 4, a daughter named Aryanna, age 1, and our new little bundle's name is Mira, and she has been diagnosed with spina bifida. She has a myelomeningocele, a chiari malformation, hydrocephalus, and a club foot. She had surgery the day after she was born on her myelomeningocele, and surgery when she was 6 days old to place a shunt in her brain. She is facing more surgeries, a lifetime of recovery and monitoring, and we will all be facing the journey of spina bifida. Prayers and kind thoughts are always welcome, and if our story can help others, that would mean the world to us. Spina bifida is a fairly common birth defect, but there's nothing normal about facing potential danger with your child. So this is our story, the journey of spina bifida, as we live it.

Wednesday, January 30, 2013

The Diagnosis

     A nurse called us back, and we went into an exam room. The nurse informed us that our OB would be in any minute to talk to us. In a matter of minutes, my OB came in, sat down, put her hand on my leg, and began the discussion.
     As she was speaking, my mind was racing, but there was little I could say. She kept asking if I had questions, but one of the only words I could form was "okay." I looked at the floor and cried and she explained our daughter's conditions.
     Our unborn baby is confirmed to have Spina Bifida. This is called an "open neural tube" which occurs when the spine does not form together during development. A gap in the spine is created, which often, and in our case has, led to other complications.
     She also has developed a Myelomeningocele, which is the most severe form of Spina Bifida, and unfortunately, the most common. A Myelomeningocele is when the spinal tissue and spinal cord come out of the gap in the spine, and entangle themselves outside of the body. My OB informed us that our daughter's defect is "substantially large" and there is little chance that she will have function of her legs.
     But wait, there's more. Because of her spine forming improperly, she also developed what is called a Chiari Malformation. This is when the bottom of the brain "leaks" into the spinal cavity where spinal fluid would normally be able to flow freely. This also caused Hydrocephalus, which is a build up of spinal fluid in the cranium around the brain. The spinal complications also caused a defect of her feet where one is notably smaller than the other.
     The open neural tube and Myelomeningocele are located at the bottom of her spine, which may decrease the possibility of her being completely paralyzed from the waste down, but it also increases her chance of having her bladder, bowels, and sexual organs compromised.
     Each one of these complications has the potential to be surgically corrected, and she could walk away to lead a fairly normal life; or each one of these complications has the potential to be fatal.
     The OB informed us that our case would be transferred to Pittsburgh, PA., told us to use the room for as much time as we needed, and left.

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