Not long after Steve Gomez’s son Anthony was born, a nurse noticed that something seemed off.
Anthony looked healthy and just a bit sleepy to his parents, but he was suffering from transposition of the general arteries, a congenital heart defect.
Since Gilbert Mercy couldn’t treat him for the condition, he was airlifted to Phoenix Children’s Hospital. For two weeks, the doctors the waited for him to become strong enough to undergo an arterial switch, which was supposed to solve the problem. But during the procedure, he went into heart failure.
Anthony was hooked up to a life-support device while the Gomezes decided what to do next.
The doctors told them they had three options: Anthony could get an artificial heart, have a full heart transplant, or get palliative care while his parents prepared to say goodbye. They chose to go through with the heart transplant, which took place when Anthony was 6 weeks old.
The procedure was successful, but doctors discovered that Anthony had formed blood clots as a side effect of the life-support machine. He had to have most of his fingers and toes and part of his right foot amputated.
Anthony is now a year and a half old, and is happy and heathy, Gomez said today. But the experience left him and his wife with lingering anxieties — especially after they realized that their son’s hospital stay alone had cost more than $2.5 million. He’ll eventually need another heart transplant, and will require regular cardiologist visits and medication for the rest of his life.
“We were fortunate enough that we had insurance through my wife’s employer,” he said. “But what if we lost that coverage tomorrow? What if my wife had to leave her job to care for him full time?”
The Congressional Budget Office’s announcement Monday that 24 million people are likely to lose their health insurance under the GOP’s proposed Obamacare replacement “made both of us sick,” Gomez said. “It’s abhorrent that so many people would be left without the ability to get healthcare.”
He’s also not sure what will happen when his son turns 27 and can no longer be covered by his parents' health insurance.
Prior to the birth of his son, Gomez hadn’t thought of himself as much of an activist. His experience with the health-care system changed that.
“I fell into the trap where I didn’t get involved because I didn’t think it affected me,” he said. “Now it’s much more at the forefront of our minds. The continuing care of our son is something that keeps us us up at night.”
On Inauguration Day, Gomez shared the full details of his son’s health condition on Facebook for the first time. Though he’d previously hesitated to talk about something so private, he felt that he owed it to his son to share his story in hopes that it might inspire people to call up their representatives and ask them to save the Affordable Care Act.
A few days later, he learned about a group called Save My Care that was traveling around the country to collect stories about Americans’ experiences with the health-care system and lobby Congress to save the Affordable Care Act. They invited him to come out to Washington, D.C.
After flying into a snowstorm, he joined Senator Chuck Schumer, Congresswoman Nancy Pelosi, and other Democratic leaders this morning at the Capitol to speak out against the GOP’s health plan.
While the Democratic contingent was welcoming and thanked him for sharing his story, his local representatives were not.
“I reached out by e-mail and got responses that were cookie-cutter, boilerplate responses, but haven’t been able to get face-to-face meetings yet,” he said.
While in D.C. today, he showed up at both John McCain and Jeff Flake’s offices. Staffers for both senators told him that they did not have a position on the GOP’s health plan yet.
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Gomez also attempted to get in touch with his congressman, Republican Andy Biggs, and found his response to be “pretty dismissive.”
The Phoenix father has been frustrated to see what’s literally a matter of life and death for his son turn into a partisan argument.
“Our politicians need to realize that this is not a political issue, this is a personal issue,” he said. “By making this a political issue, you’re denying Americans the fundamental rights of health care.”