Our founder, Amanda Kern, didn’t intend on starting a nonprofit organization. As a newborn photographer, before her son Chance was born she only dreamed of having a perfect baby. She learned he would be born with the birth defect spina bifida midway through her pregnancy and was sent home with outdated photocopied resources that were all 20 - 30 years old which only informed her family of a long list of medical jargon of what would be wrong with their unborn child. She came very close to giving up on her son’s life. It’s hard not to want to give up when you hear so much may be wrong with your child and you just pray to protect them from suffering. As an educator, she also researched as much as she could so she could make an informed decision. None of the resources helped her really understand what life with spina bifida would be like and resorting to Google only horrified her to find photos of aborted babies, surgical photos and babies or children with untreated hydrocephalus. Instead of giving up she elected to give her baby a “chance” to show the world what his life would be like. His presence in her life has lead her to give back passionately to create awareness, improve resources, and begin Redefining Spina Bifida four years after her son Chance was born.
After attempting to create awareness of spina bifida in central Florida and seeking support from local and national organizations to create awareness and prenatal resources she realized the need to begin Redefining Spina Bifida. No other organization was willing to pursue and commit to the vision and dreams to bring awareness and prenatal resources to the level our team knew was possible and desperately needed. Other resources were not only outdated but lacked imagery and the personal touch to help a newly diagnosed find hope through the challenges that often occur with spina bifida. The awareness work shared online reached a passionate community around the world who were just as eager to see improved awareness and resources for spina bifida.
In 2014, Amanda was invited to the NICU to support a new family who had a baby with spina bifida. The family knew little about spina bifida and were frightened and feared their daughter might die. Like her son Chance, she began her life with significant medical needs but her life also held so much promise. The family shared that seeing her photos of babies, kids and adults living with spina bifida was the first time they felt hope. Later that day she learned the baby’s grandmother, Tammy Bunn, was a photographer in North Carolina and she expressed an interest in doing similar photography work of children with spina bifida. Within the next day she connected with a group of photographers who all had children with spina bifida. Today our organization now has over a dozen photographers who have children affected by spina bifida who have volunteered to form what is known now as Redefining Spina Bifida. Within a few days the team collaborated on dreams and ideas. The organization was formally founded and established as 501(c)3 in May 2015 and has since grown to have over 16,000 followers in more than 46 different countries. The organization has the 2nd largest social media following of all spina bifida organizations in the world. We now have more than a dozen photographers volunteering around the country with one in the UK. Our team also has writers and advocates who all are eager to support the endeavors to improve prenatal resources and create awareness of spina bifida.
In the United States about 1,600 babies are born every year with spina bifida, however, it is a conservative estimate that more than half of babies born with spina bifida are faced with termination, yet there are no formal studies that openly report legitimate rates of termination. Nearly every family who receives this diagnosis early enough in pregnancy will be given this option and in some cases openly share they are urged to consider it. In most other countries the termination rate is well over 90% and if children are born in countries without adequate medical systems the children are commonly put in orphanages and left untreated and often die at a very young age. Every year that passes that this work isn’t complete thousands more babies lives are at stake because families often give up due to the lack of resources or because medical professionals give only a dismal outlook on the life of a person born with spina bifida. Although the resources would not be in place to sway a decision, we pray the resources bring families the hope needed to know living this journey raising a child with spina bifida is possible and can come with many blessings. We hope the resources help expectant parents have the little ray of hope to trust that despite the hardship they may face that their babies lives have potential.