The reality TV stars talk about childhood and raising kids with complex medical conditions.
By Jennifer Arnold, M.D., neonatologist, Texas Children’s Hospital
Bill and I grew up in separate states, New York and Florida, but we had more in common than just our diagnoses. We both traveled frequently for medical treatment. In fact, we learned that we both traveled to Johns Hopkins Medicine in Maryland to seek care from the same orthopedic surgeon—the only one dedicated to treating people with skeletal dysplasia. For the most part, our condition is now a matter of maintaining alignment. Once we reached adulthood, our need for corrective surgery lessened to a couple of hip replacements and regular evaluations. Our reduced need for routine surgeries as adults is due largely to the treatment we received as kids.
As adults, we now travel for different reasons. We flew across the globe to meet and adopt our children, Will and Zoey. We welcomed Will into our family after reading his story on rainbowkids.com. After submitting our papers to China, the adoption coordinator from the Little People of America contacted us and introduced us to Zoey. After learning about both kids, we traveled around the world twice with the sincere interest in getting them home as soon as possible.
Will is a precocious 4-year-old from Hohhot, Inner Mongolia, People’s Republic of China. He has been clinically diagnosed with Achondroplasia, a type of dwarfism that will likely require a number of surgical procedures during his lifetime. Will has already faced and successfully emerged from surgery to remedy his hearing and reduce his obstructive sleep apnea. He receives treatment from orthopedic and genetic specialists at Nemours/Alfred I. duPont Hospital for Children in Delaware and a variety of pediatric specialists closer to home at Texas Children’s Hospital in Houston. Zoey is a tenacious 2-year-old from Mumbai, India. She also has Achondroplasia, but the clinical diagnosis has yet to be confirmed. So far, Zoey has not needed any surgery to correct hearing or apnea. While her skeletal system seems to be currently intact, she is expected to require some level of orthopedic care, and we plan to take her to the same specialists her brother benefits from.
As we again travel across the county seeking treatment from this dream team of experts, Will and Zoey will receive care that would not have been available to them before. We hope that as they reach adulthood they look back and are happy they received what was necessary to give them the best chance at success—in whatever way they define it. We tell other parents like us who know what it means to travel and to care for children with medical complexity: Be vigilant, aggressive and tenacious. Don’t put your kids in a bubble, and be sure they get the care they need. Don’t settle. Don’t let insurance companies, hospitals, doctors or uninformed family members steer you off course.
Bill and I have been through a lot. We are friends, partners and jet-setters. But first and foremost we are parents, and nothing makes us happier than knowing the world that was once inaccessible to our children is now a canvas on which they can paint the brightest future.
Jennifer Arnold, M.D. is a neonatologist at Texas Children’s Hospital.
Send questions or comments to firstname.lastname@example.org