Traci Nagy, the founder of the Feeding Tube Awareness Foundation, grabbed my attention yesterday with a piece she wrote for the Global Gene Project’s website. In it, she discusses the importance of providing support and acceptance to the families of children who need feeding tubes, and she shares her own story:
My son was two months old, and we did not have a full picture of what was going on medically, but we knew he wouldn’t be able to eat enough to live, let alone grow or thrive.
It is difficult to have people stare at your baby for negative reasons. The NG tube was often mistaken for oxygen. Brazen strangers asked what was “wrong” with him or even suggested that he would be better off at the hospital. “Helpful” relatives suggested that we needed second opinions. It wasn’t the full support we needed, particularly with being sleep deprived and emotionally drained.
It took 20 months and dozens of tests to get to the diagnosis of 17q21.31 microdeletion syndrome, recently named Koolen de Vries Syndrome. After diagnosis, I had time to reflect on our journey. The piece that was misunderstood the most was tube feeding, not the missed milestones. Food is different. It is social, it is a reward, it is nurturing, and it is the first bond you have with your child. It is baffling to think a child won’t or can’t eat.
What so many people don’t understand is just how many medical conditions and diseases can lead children to need nutritional support from tube feeding…
Previously: The emotional struggles of parents of preemies