Nineska, often called “Nina” by her friends and family, is one of our inspiring kids living with spina bifida here in central Florida. You might be in awe with her beauty, her smile, or perhaps her sweet personality – but we think reflecting on her journey will really touch your heart.
Just over six years ago Nina’s mother, Eida, had learned that Nina would be born with spina bifida. After learning more about spina bifida she elected to be a part of the MOMS research study and underwent fetal surgery while she was still pregnant with Nina with the hopes that it would improve her daughter’s outcome. One of the biggest risks of the fetal surgery is premature birth. Eida underwent surgery when she was just 24 weeks pregnant with Nina and one week later her baby girl was born weighing just 1lb 10oz and only 12 inches long.
Nina spent the first three months of her life in the NICU, even requiring emergency surgery that left her with only a 50/50 chance at surviving the surgery. Nina proved from the very beginning that she was a fighter so full of life.
Starting at a very early age Nina has been in physical, occupational and speech therapy. Nina’s mother credits many of Nina’s advancements to her therapists.
Although Nina does use braces, a walker and a wheelchair at times she has learned to walk with the assistance of crutches. Eida informed us, “having a kid with spina bifida is challenging for the family because you have ups and downs and you have to be very patient because it takes a longer time to see results but it is great when they accomplish something and it helps you appreciate life more.”
In her first six years of life Nina has underwent 14 total surgeries – ranging from her back closure, intestinal surgery, shunt related surgeries and most recently a vesicostomy, ace and an additonal unexpected surgery to her bladder after a car accident. Although some moments have been challenging Eida shares, “We are lucky as parents to have a kids with spina bifida, they are very special.” She tells us that along with the challenging moments come laughter and special moments that help their entire family learn and appreciate life so much more.
Eida thank you for sharing Nina’s story with our community. Nina certainly is a miracle who we feel blessed to have as a part of our spina bifida community.
Do you have a child (or are you an adult) living with spina bifida and would like to share your experiences living with spina bifida? If so contact Amanda Kern at firstname.lastname@example.org so we can discuss the possibilities of sharing the experiences of more of our local babies, kids & adults living with spina bifida with our community.