Our story (the short version)
Hi! I am Lydia, mother of 5, two of whom are girls with SB. We found out that Lauren would have SB when I was just over 20 weeks pregnant with her. The fetal surgery was ongoing at Vanderbilt at that time, but we were not candidates for the surgery. Praise God, because I ended up having sweet twin boys after that pregnancy that I would not have if I had done the surgery. Lauren had a very large lesion and required 10 hours of surgery at one day old to close it, a plastic surgeon had to be called in to assist the neurosurgeon at Duke Children’s Hospital. Lauren did not have hydrocephalus until one month old, which can happen once spine is closed, if child did not have it before closure. Lauren sat at 6 months, crawled at one year and took her first steps (cruising on furniture) at 14 months. She functions at a much higher level than we were initially told, the doctors made assumptions based on size and level of her lesion. She walks with walking sticks and AFOs majority of the time. Independent toileting. She is 11 years old. When she was 5, she kept saying she wanted a sister “like me.” She was fully aware that she was different from her peers. We had heard of parents of children with DS adopting another child with DS so their child would have a pal to grow up with that was like them. We thought, “Why not us?” So, on April 30, 2009, we set out to adopt a little girls with Spina Bifida. On August 30 of that same year (4 months later!), we landed on US soil with our new daughter, Mira. Mira is a L2/L3 but functions much lower due to a poor start in life with limited medical intervention. She was nearly 3 years old when we brought her home. After getting home, we learned that Mira also has Fetal Alcohol Syndrome and autism, likely a drug baby, and her bio mother smoked. However, she is thriving and growing and learning. There’s a lot to be said for a stable home environment! We have had just about everything, from club feet to tethered cord, shunt revisions, bowel and bladder surgeries, etc. I love educating and empowering others who are living with SB!