My daughter Brylan was born on Christmas Day and was sent home from the hospital as a healthy baby.
A few weeks later, my sister noticed that Brylan's foot seemed a little swollen. At her one-month checkup, her pediatrician also seemed concerned and thus began our journey for a diagnosis. I was continuously told to "wait and see" or "she will grow out of whatever it is" by medical professionals.
I quickly realized that I had to be my daughter's voice, her advocate. After 8 doctors, lots of testing, swelling movement up her legs, and 10 long months of my own research, we landed at Boston Children's Hospital. Brylan was officially diagnosed with infant-onset primary lymphedema in both legs and feet at 11 months old.
Now that we had a diagnosis, my husband and I were determined to help our daughter in every way we could. Customized compression garments were the first step.
Fast forward two months later, we were finally approved for a little coverage help through our insurance after what seemed like an endless amount of arguments, phone calls, and emails. Within that two month time period, Brylan had a growth spurt and we had to start the whole process again.
I know that this story is probably similar to so many families out there. The lack of education and awareness of lymphedema is extremely disheartening, especially for pediatric patients who are affected. I hope that as a community, we are able to change this and make lymphedema treatment more of a priority.