Sleep? Sleep is overrated! Last night was extremely rough. I spent most of the time researching spina bifida. If you have recently been diagnosed, please do not Google! Doing so will only make you more scared. However, check out BabyCenter: Spina Bifida Kids. This message board has been a wonderful resource for not only me, but a lot of parents.
Today was our appointment with Dr. K - our second opinion. At Dr. K's we had a more in depth ultrasound. After researching I knew what lemon and banana sign looked like and up on the screen was my sweet boy's head with a very obvious lemon shape. My heart shattered. All of my thoughts of thinking this was all just a mistake became a reality.
The doctor came in midway through the ultrasound and after a quick intro, began talking with the ultrasound tech. After about 10 minutes of looking at the baby, she sat on the edge of the bed and very softly explained that our son did in fact have spina bifida. There it was - the truth that we didn't want to hear. The truth that we fought so hard last night to tell ourselves was a mistake. She showed us his head and pointed out the lemon and banana sign and explained what was causing it to happen. We learned that due to the spina bifida, Jackson's cerebellum was being pulled down the base of his neck. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation. Dr. K also confirmed that both feet are clubbed. She explained how the feet being clubbed could show nerve damage that has already occurred due to his open lesion. However, his clubbed feet could also have nothing to do with nerve damage. This was one of the many unknowns. While Jackson's lesion could be seen, Dr. K couldn't be certain of it's location, nor how large it was. Another unknown to add to our list.
Dr. K spent a lot of time with us trying to explain everything to the best of her ability, but again, we were offered termination due to not knowing what his quality of life would be. Even after that, I felt that she was very compassionate towards us and I thank her for that. I thank her for spending so much time with Matt, my mother in law, and me. I thank her for her hugs and kind words.
We were informed of a fetal operation that would take place no later than 25 weeks if we qualified and were interested in having the operation. She set up an appointment at Vanderbilt Children's Hospital to meet with a team of specialists. She explained that even if we decided to not have fetal surgery, meeting with the team of specialists would provide us with a lot of valuable information specific to our son. Our appointment was scheduled for March 27th. Two weeks - two weeks of wondering, worrying, praying, etc. Two weeks of the unknown.
While our meeting with Dr. K was heartbreaking with the confirmation of Jackson's spina bifida, we both left feeling like a small weight was lifted off of our shoulders. There's no denying it, our son has spina bifida. That's still hard to say/type. I imagine that it's going to be hard to say/type for some time. It's going to be a tough two weeks. I hate the unknown. However, what I do know is that my husband and I love our son so much already. I also know that he is going to do something big in his life. Jackson has a purpose and a mission, we just don't know what it is yet.
Crystal
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