Hello I am Bethany! I am the mother of a baby girl who was born with Spina Bifida. Her name is Piper. Our family’s story is a little different from many I have read because we have been so very blessed with Piper’s recovery and strength.
I took a blood test when I was pregnant that was to indicate the sex of our baby and also test for other abnormalities. We were called back in to the office for a follow-up ultrasound when they discovered our baby likely had a neural tube birth defect. The ultrasound proved the test was correct; you could see the bubble, if you will, on her lower back. This news came as a shock. The doctors wanted to be sure we knew all of our “options,” which basically was that we could abort the baby. We had a different option in mind; prayer and the healing hand of God. This very night, I called up Sally, my spiritual grandma, and told her the news. She has a grandson who is a dear friend of ours with Spina Bifida. Sally is a prayer warrior and also had a group of other believers at her house when I called who joined in the prayer. The main point I remember was they asked that God touch our baby’s back and heal it right up.
In April 2016, Piper was born. At one-day old, she went in to have her back surgery to repair the myelomeningocele defect. It was determined the defect affected level S3 or lower, which is pretty low on the tail bone. This meant Piper has a very good chance of minimal effects from her birth defect.
Piper’s stay in the NICU lasted 18 days. We were thankful to get to go home when we did, knowing full-well that many babies have to remain in the NICU for months. The nurses and doctors there were very helpful in teaching us about her special care. Because her defect was so low on her back, one of the bigger issues we dealt with was keeping her bowel movements off of her healing surgery site. For about 2 months, we had a very specific diapering regimen which included frequent sponge baths right there on the changing table in order to ensure her wound would heal up without infection. This time was stressful and very tedious.
After she was healed up, the doctor visits were more focused on assessing what nerve damage she has at this point and ensuring her bathroom functions are working the way they should. We have learned this is a very common thing with a Spina Bifida diagnosis, because the bathroom function nerves are the lowest on the spinal cord; they usually are affected to some degree with every patient. Through testing and re-testing, it was determined she has a constricted bladder which doesn’t hold much due to not expanding the way it should when filled up. The concern is they don’t want to see her kidneys affected or damaged. We are putting her on a very low dosage of medication to help relax her bladder a bit, and we also manually catheterize her 4 times a day to be sure she doesn’t have anything backed up in her bladder. This could cause infection or kidney damage.
She does not require a shunt to drain fluid from her brain at this point. They will follow-up on that in a year. As her mother, I quit my full-time job to be at home with Piper and take care of her the way she needs. It has been a blessing two-fold, as I love being a stay-at-home mommy and wife! Praise the Lord! We thank the Lord every day, every moment, with how well Piper is doing. It could be so very different