For those of you who don’t know, Spina Bifida has touched our lives tremendously. At 6 weeks old, David and I inquired with Pepper’s then pediatrician about a birthmark on her lower back. We were told this was a “stork bite” and it would go away. The birthmark had not gone away on subsequent visits to different pediatricians in the same office, so I sought the advice of a good friend and experienced mom, and went to see their family’s pediatrician, Dr. Peri Gunay. Dr. Gunay did not want to alarm us, and after going through several books and photos of birthmarks, she informed us that Pepper’s mark was not a “stork bite”, but was possible a tethered spinal cord (a form of Spina Bifida), and that we should see a pediatric neurosurgeon immediately.
Needless to say, this was a huge blow to our family, and we were stunned walking out of the office. The following day, we went to see a neurosurgeon- and began a long 17-day journey. The neurosurgeon ordered an MRI of Pepper’s spinal cord at CHOC. The radiologists and technicians at CHOC were incredibly efficient, and handed us a CD and films of Pepper’s MRI within 15 minutes of completing the procedure. We walked across the street to the neurosurgeon’s office, where he told us that Pepper’s cord was tethered in 3 different places, with 3 different types of tethers- the first child he had ever seen with all 3 types.
Surgery was scheduled a week later- a mere 17 days from Dr. Gunay’s referral to the neurosurgeon, our daughter was to have a major surgery to repair 3 birth defects on her spinal cord. To say the least, our family was shocked.. At 4 months, 10 days old, we would surrender our daughter to the careful hands of a surgeon in the operating theater, and spend a full working week; Monday through Friday in the hospital working with the incredible nursing staff, tending to a tiny helpless human’s needs. The first few days were rough.
Through the tenderness of the nurses, we were able to keep her pain managed, and once she was off morphine for a full 24 hours, we were released to go home.
Little did we know, this was not the end of our journey with Spina Bifida. Last summer, Pepper starting to have some difficulty with incontinence, one of the signs that her spinal cord had re-tethered. After a brief visit with the neurosurgeon, an MRI was scheduled to take a peek at Pepper's spinal cord, and another tether was discovered. On September 4, 2015- Pepper underwent what would be the most ambitions operation of her young life.
This time, the surgery was more difficult, and the road to recovery will be longer. The tether was scar tissue that had formed where the cyst had been removed the first time. It was the most difficult untethering her surgeon faced. Five more days in the hospital, 3 in PICU and 2 in the neuroscience ward left our family of three feeling drained and ready to go home.
Early in 2016 Pepper began complaining of chronic back and leg pain. After discussing the issue with Dr. Gunnay, we decided to take Pepper for a second opinion at Cedars Sinai. The neurosurgeon there ordered another MRI which showed that Pepper had rethered again and would, one day require another surgery. He also asked that we meet with a new team of doctors and nurses and begin a course of study and try to hold off surgery as long as possible. He explained that the possibility side effects of a third surgery are significantly greater and that the longer we waited for the surgery the easier the procedure would be, but the longer the recovery. (risks include permanent incontinence, loss of the use of her legs, neuropothy and infertility)
Now Pepper has to have an annual MRI and bladder study along with regular checkups and physical therapy.