Why I Traveled To DC To Advocate For My Son

When my son was born extremely preterm at 25 weeks, I was terrified. I didn’t know whether my baby would survive, and if he did, what his life would look like, and how we would care for him. I also never imagined that he would become such a driving force and deep inspiration to my family.

Conner spent the first 127 days of his life in the hospital, battling meningitis, multiple surgeries, a brain bleed, and liver disease. He was diagnosed with cerebral palsy, seizures, and blindness. Before Conner came into our lives, my husband and I had no idea what the term “medically complex” really meant. But we were unexpectedly tasked with facing countless medical crises and developmental delays, and helping our baby conquer the impossible and reach his full potential.

Now, Conner is a 9-year-old boy who many describe as fearless and inspirational. He has taught us so much about determination, caring for others, and devoting our energy in every way possible to making the world a brighter place.

A couple weeks ago, we did this by traveling from New Jersey to Washington, D.C., to join 50 other families and the Children’s Hospital Association on Capitol Hill for Speak Now for Kids Family Advocacy Day. Our goal was to represent the 3 million kids in the United States with medical complexity, sharing our unique experiences in caring for Conner and urging members of congress to improve healthcare for children like him. We met with Senators, Congressional members, and staff from our district to discuss the importance of safeguarding Medicaid, which has been absolutely vital to Conner’s care.

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Many people think Medicaid is just for “poor people,” and don’t realize how crucial it is for America’s children. It covers nearly half of premature births, and two-thirds of the country’s children with complex medical conditions rely on the federal-state Medicaid program as their primary or supplemental insurance payer.

We wouldn’t be where we are today without the necessary coverage we receive from Medicaid. It has helped fill the gaps when our private insurance and TRICARE don’t cover certain needs, particularly the extremely supportive care Conner receives from Children’s Specialized Hospital in New Brunswick, N.J. Not only has Conner been cared for by dozens of highly-trained pediatric specialists, but the children’s hospital has been vital in giving us the tools we need to support his care at home, help him transition to school, and reach developmental milestones that otherwise would never have been possible.

He still has many, many limitations and challenges. He continues seeing nine pediatric specialists for regular care. We’ve struggled with the emotional toll of often taking one step forward, only to take one painful step back. But we’ve also flourished as a family. In addition to advocating every year on Capitol Hill, we participate in other activities to help families struggling with medical issues, like volunteering at the Ronald McDonald House and participating in the Children’ s Specialized Hospital 5K Walk n’ Roll fundraiser. Conner’s older brother, C.J., already has high hopes of becoming a doctor one day, to help kids like his brother survive and thrive.

The good news is that medical advancements have expanded the lifespan of children with medical complexity and allowed them to live fuller lives. Years ago, most babies born very prematurely had no access to specialized care and did not have a shot at life. Now, with advances in neonatal medicine and the training of pediatric specialists, more children born prematurely are surviving. According to data from the Children’s Hospital Association, the inpatient mortality rate for children considered premature dropped from 3.4% in 2009 to 2.4% in 2018. They also found that fewer babies are being born extremely preterm, like Conner.

With these advancements, the population of children with complex medical needs is growing. Prematurity is associated with learning and motor disabilities, visual and hearing impairment, and developmental delays, contributing to approximately half of all disabilities in children. That is why it’s so important to safeguard Medicaid and make sure children’s health remains a top priority among policymakers.

Caring for Conner has pushed me and my family in unimaginable ways. It’s been extremely tough, yet extremely rewarding. It’s opened my eyes to the healthcare challenges our country faces, and all the important work that can be done to ensure families like mine are not forgotten.