My son relies on Medicaid to live, and every time US lawmakers vote to strip Medicaid’s funding, they put my young child at risk.
Recently, a conservative group in the USA announced their latest proposal to repeal the Affordable Care Act. In the same month, the presidential administration announced a finalized rule on junk insurance plans, and lawmakers unveiled a budget proposal that contains enormous cuts to Medicaid and other lifesaving health care programs.
My son, Colton, is six years old. He’s intelligent and kind – and like thousands of Americans across the country, he is a child with complex medical needs. As a member of Little Lobbyists and Health Care Voter, I am one of the millions of people fighting for his right to live.
Colton was born after an easy labor, but we only had a few moments to enjoy his peace before he suddenly stopped breathing and began to have seizures. I lived many parents’ worst nightmare when my beautiful baby spent the first months of his life in the neonatal intensive care unit (NICU), fighting for his life.
A few weeks into the NICU stay, a hospital representative from billing came to inform us that Colton had reached his ‘limit’ on the insurance that I received through my job.
I remember staring at her, confused. His limit? What did that mean?
It meant that since there were certain caps on our insurance policy, soon after his birth Colton had already reached his lifetime limit of available insurance.
The hospital representative asked about our plan for payment. I didn’t know how to respond. I hold a Master’s Degree, and both my husband and I have worked our entire lives. And yet, like countless working families, we did not have the millions of dollars to pay health care providers for the necessary treatment to keep our child alive.
Medicaid was our answer.
In those early months, Colton suffered numerous central apnea episodes, during which he would stop breathing and require resuscitation. Due to his low muscle tone and inability to swallow, he was also having difficulty feeding. Every day, my husband and I watched our child becoming weaker and weaker.
The solution was for him to undergo surgery to place a tracheostomy tube. In the days after his surgery, I remember standing beside Colton and crying.
As a new parent of a child with complex medical needs, I felt incredibly overwhelmed by the numerous machines and wires surrounding him: pulse oximeter, heart apnea machine, ventilator and circuits, oxygen, suction machine, feeding pump and extensions. I stared at all of it and wondered how on earth I could ever parent him.
One of the physicians must have read my mind because he walked up beside me and said, “Once Colton is in his home with his family and in a routine with people who love him, he will thrive and he will grow and you will see him at his best.”
It was a moment I’ve never forgotten. Those words from that doctor were the best medicine this mother could have ever been given. I became determined to learn everything I could, to get him home where he belonged, and to give him a life filled with happiness.
But in the months that followed, I found out that it takes much more than loving parents to keep a child like Colton healthy.
Every month, my family receives shipments from our medical provider of supplies to help keep Colton alive. We receive boxes filled with ventilator circuits, trachs, trach connectors, trach ties, suction supplies, filters, gauze, humidification supplies, syringes, catheters, nebulizer kits, pulse ox probes, peroxide, sterile water, medical tape, prescription formula, Pedialyte, feeding pump bags, extension tubing…the list goes on.
Each item is a necessary piece of the puzzle that keeps my son alive and out of the hospital. Each item is a vital piece of his life that allows him to laugh and play with his sisters and watch cartoons and kick his legs to dance to music. And each item arrives thanks to the continued coverage of Medicaid.
Medicaid became our lifeline, the salvation that keeps my child thriving and my family out of poverty.
I’ve watched Colton battle back from the brink of death more times than any mother should have to endure – and every time lawmakers attempt to cut the funding to the program that keeps my son alive, they push him back towards that brink.
Colton has a thirst for life. He loves every moment of every day, he takes the world in and gives back to all of us with his lesson of resilience. And like any child, he deserves the chance to live.