“Is she okay?” the startled legislative staffer asked, eyes shifting to the adults around him as the trach tube protruding from the neck of a 2-year-old gurgled.
In the air-conditioned, marble halls of Congress, you often hear the click of heels as staffers rush from room to room or the booming voices of our nation’s representatives making a pitch for some legislation.
You do not hear the gurgle of a trach tube.
Until this week.
“Let me just suction,” one mom said as a blue-suited staffer’s eyes widened at the strange sounds coming from the toddler in pigtails.
“We could see it in their eyes, most of them have never seen a child with a trach tube,” said Elena Hung, one of the moms who on Tuesday walked the halls pushing her child’s giant medical rig, showing Capitol Hill folks the actual kids their wheeling, dealing, backroom bargaining and political gamesmanship will affect in the repeal and replacement of the Affordable Care Act.
No public hearing? No answers to emails? No one picking up the phone calls?
These kids smiled, giggled and then their tubes gurgled to show what’s at stake here.
It was real-life lobbying done by a brigade of 12 intrepid families who pushed their way through Capitol Hill’s offices and shared their stories and the stories of nearly 150 other families from across the country who feel ignored.
“We heard from a lot of families that it’s really, really difficult to get in touch with any of their representatives,” Hung said. “They say, ‘Call your representatives,’ but most of these offices aren’t even taking calls.”
So they showed up in person.
Hear the whoosh of a ventilator? Mind holding the formula, sir, while I pump liquid food into my 6-year-old’s gastrointestinal tube?
This costly, frightening, complicated world of medicine is reality for millions across America — kids who need 24-hour care, whose medical bills can hit $3 million in five months, the kids whose families would have gone bankrupt long ago if it weren’t for Medicaid.
The Affordable Care Act included a small but significant provision that removed the lifetime spending cap of most insurance plans — which usually cut a patient off at $1 million. These kids easily hit that in a few months.
The American Health Care Act that the House passed would allow many employers to bring that cap back.
So some Washington-area families — who saw parents across the country take to Facebook to talk about the possibility that their children’s lives would be left out of this health-care debate — decided to help.
It took them forever to get through security. Imagine that oxygen tank and the metal detector. But they made it in. And as they shared elevators with lobbyists from the liquid metal industry who smiled tightly at the elevator full of wheelchairs, they brought real life to this tidy enclave of lawmakers.
They had binders — tabbed by state — full of nearly 150 stories of medically fragile children — their photos, their parents’ voices, what their care costs and what their lives are like.
If they could get someone in each office to sit down with them, they would open the binder to the state and ask them to look.
Look at smiling 12-year-old Parker from Utah, who needs a feeding tube, an aspirator, a trach and loads of medication to survive. One drug costs $100,000 a year. For a while, his family relied on food that neighbors left on their doorstep because Parker’s medical bills were so high after their health insurance capped out.
Look at 11-year-old Austin from Pennsylvania running on the beach, something he can do just one hour a day, when he doesn’t have to wear the mobile IV that pumps fluid directly into his heart the other 23 hours. He goes to the hospital often. And he was so haunted by the homeless folks he saw outside the hospital that he put together a backpack of Hershey’s Kisses, snacks and a blanket he got at camp to give to one of them, said his mom, Jen Rath. If the House health-care plan becomes law, “my son would likely die,” she said. It would be “catastrophic.”
Hey, Louisiana, look at Riley. He’s a super-smiley 7-month-old with a medical history that is already 4,000 pages long.
These parents had their target states — the ones with Republican senators who may be on the fence about the upcoming health-care vote — and they lobbied them hard. Some representatives sent staffers out to sit and talk with the families.
“The nursing care that Medicaid covers is absolutely critical,” explained one mother. She had come to Capitol Hill with her son, Pierce, who is 3 and was born with Moebius syndrome, a brain injury that causes facial paralysis. He needs a feeding tube to eat, a trach tube to breathe and the nurse who helps her to care for him.
She told of her fear, the fear that so many parents like her have, of dozing off, not hearing the oxygen monitor, having her child die. She tried to make the case that all the assistance they get — from the costly medication to the 24-hour care — is vital. And the new plan simply won’t cover it. And their children won’t survive it.
So no, congressional staffers surprised by the trach tubes, the oxygen tanks, the wide smiles from kids who can’t eat or breathe without help, the kids won’t be okay. Not if you’re not listening.