BY KATIE WALSH — In Hyattsville, a neighborhood barbecue served up more than a meal for friends: It started a movement.
Residents Ben and Nicole Zeitler’s son, Pierce, had been born in December 2013 with Moebius syndrome, a rare craniofacial/neurological disorder most commonly marked by facial paralysis. Pierce had spent 66 days in the neonatal intensive care unit, and upon leaving the hospital needed a tracheostomy tube to breathe as well as around-the-clock medical care. Pierce frequently had seizures and would turn blue, requiring the Zeitlers to desperately scramble to save his life. It was a shocking, stressful new reality for the family, and Ben Zeitler said his wife turned to the internet for solidarity.
“It’s kind of tough when you come home because you don’t know what to do, if there’s anybody else out there like you,” said Ben Zeitler. “So, she actually looked up a couple of groups on Facebook and found out there were other parents in the area who also had kids who had trachs.”
The Zeitlers decided to throw a barbecue at their Hyattsville home in order to meet those families and form a support system. The get-together allowed fellow parents of medically complex children Elena Hung and Michelle Morrison to become friends. A few short years later in June of this year, when Republicans launched efforts to repeal and replace the Affordable Care Act, Hung and Morrison co-founded the Little Lobbyists. The group, now composed of families nationwide who rely on the Affordable Care Act to be able to access the kind of medical care their children need, makes regular visits to the Capitol Hill offices of senators — with kids in tow — in order to advocate against repeal.
“It’s amazing how quickly an idea that was thought up by just a couple of moms sitting around a kitchen table became a movement that has been visible nationwide and impactful on the federal level in a very powerful way,” said Nicole Zeitler.
The Little Lobbyists have made a total of 14 trips to Capitol Hill over the last six weeks, visiting all 100 Senate offices, and meeting with 20 senators and 33 Senate staffers, Hung said. While the Zeitlers have not attended every single trip to the Hill, Hung said they have remained active members, helping to reach out to both the media and members of the Senate to share the group’s stories in addition to making visits.
“Our kids show a human side of the health care issue that would otherwise be a very complicated discussion about insurance and Medicaid, and most people don’t understand either of those things,” said Nicole Zeitler. “But what people do understand is kids.”
Ben Zeitler estimates the family has made the 25-minute trip from Hyattsville four or five times, an experience he calls “a bit nerve-wracking.” The group specifically targeted several senators who were on the fence about voting for the repeal and handed out letters outlining their goals in addition to gaining some face time with them.
“Our focus has really been on our kids, and how our kids would respond, and what they would think, and what they would say to people as they go in,” said Ben Zeitler. “So you pile into an office with seven or eight kids and three or four wheelchairs or strollers, and parents with them — it kind of fills up an entire office lobby.”
Ben Zeitler said he believes his family’s visits as well as those of the other Little Lobbyists have made a major difference in the course of health care legislation. He cited the quick growth of the group’s following on social media as well as comments from senators and staffers encouraging the Little Lobbyists to keep up the fight.
“This is really the way to get through, and it does make a difference,” he said. “They really do see, and they do listen, and they are paying attention to it.”
Pierce Zeitler, of course, has been one of those children whose wheelchair has been inside various Senate offices. His medical issues began several months before he was even born, with a fetal MRI that indicated he had an unusually small chin. Doctors weren’t sure what the problem was — or if there was even a problem at all. It was upon Pierce’s birth that the Zeitlers truly knew something was wrong. Pierce was immediately given oxygen, and shortly thereafter was transferred to the neonatal intensive care unit. Ben Zeitler remembers watching his son flatline and then be revived by his doctors, just 45 minutes after he was born.
“They had to have breathing tubes hooked up to him. They actually had to put him on his belly because his tongue would occlude his throat,” he said. “It was really that first night that we knew something was wrong, that it was going to be a long haul.”
Today, Pierce still requires a trach tube to breathe as well as a gastronomy tube to eat. Additionally, Pierce’s condition is such that he requires “24-hour awake and alert care,” meaning that when the Zeitlers go to bed, a nurse comes to their home to ensure Pierce’s trach tube doesn’t clog and prevent him from breathing. Although Pierce is 3½ years old, he is unable to sit, walk or hold his own head up.
But despite these problems, Pierce has made tremendous progress, according to his father. He has gotten stronger and grown significantly, and he follows a daily regimen that in many ways mirrors that of other 3½-year-olds. During the last school year he attended Kingsford Elementary School in Mitchellville from 7:45 a.m. to 10:15 a.m. during the week, after which he rode the school bus home, where he was cared for by a nurse until the Zeitlers returned from work. Pierce is also given therapies daily that encourage him to use his limbs more, and he’s on medications now that make him much more stable than he was during his first few months of life. He loves being outside and going to the aquarium, and this upcoming school year he will attend full time.
He’s a typical 3½-year-old in other ways, too, according to Ben Zeitler. Pierce apparently is going through the “terrible threes.”
“When you look at him, he has facial paralysis, so he can’t show emotion on his face, and I get the feeling that people think there is just nothing there because his face doesn’t move,” said Ben Zeitler. “But you can tell by looking in his eyes and how he acts and reacts that he is giving you the finger, or throwing a temper tantrum, or telling you that he doesn’t want something.”
For the Zeitlers, Pierce’s condition makes the Affordable Care Act “incredibly personal,” according to Nicole Zeitler.
“This is not some sort of detached political debate that isn’t going to affect us — this is absolutely going to affect us,” she said. “Our ability to hold our jobs is hanging in the balance. We will be crushed by medical bills if we don’t have an ability to have the hundreds of thousands of dollars a year that Pierce incurs in medical bills covered, and I think it’s really hard for regular Americans to understand that. … It’s truly something that you cannot understand until you have a child that you have to save their life continuously.”
Both Ben and Nicole Zeitler have insurance through their full-time jobs — Ben works as a regional property manager and Nicole is a disability rights lawyer — but without certain protections they receive through the ACA, their ability to have coverage for Pierce would be in jeopardy.
Ben Zeitler specifically pointed to protections for pre-existing conditions, elimination of lifetime maximums, and Medicaid expansion, which Pierce uses as a tertiary insurance policy, as being necessary for their family.
“And who’s to know what other sorts of impacts might take place if it were to be repealed,” Ben Zeitler said. “I think that fixing some of the problems that are out there — you know, rising premiums, people not having choices of doctors, et cetera — are really important, but just to wipe it out, to bring us back to what we were, could really impact our family and other families of medically complex children.”
With medical care, people who have Moebius syndrome can go on to live full, happy lives. The Zeitlers have been able to attend two conferences put on by the Moebius Syndrome Foundation, where they have met people with the condition of all ages and all walks of life; people who have different jobs, and some who have advanced degrees. It’s the kind of life they hope for for Pierce, the Zeitlers say, and it’s why they think it’s important to participate in the Little Lobbyists.
Even though the latest attempt at repeal of the ACA collapsed last month, the Little Lobbyists do not intend to slow down their lobbying efforts.
“The Little Lobbyists will continue to be active and visit the Hill as necessary,” said Hung. “First, we will continue to monitor the health care debate and be ready to jump back in at a moment’s notice. This fight is not over.”
Hung said the group is also actively working to protect the Children’s Health Insurance Program and support the Disability Integration Act as well as being active in get-out-the-vote efforts across the country in order to elect people who support their position.
Of course, the group may not have come to fruition if the Zeitlers hadn’t thrown their barbecue. Hung said many of the families who are now regularly involved in the Little Lobbyists initially met at their house, where the barbecue has become an annual event.
“I love Hyattsville because some of my best friends are here, and the Hyattsville community knows Pierce and was here for his birth and his hospitalizations and some really, really scary times at home,” Nicole Zeitler said. “I think unlike some other communities, a lot of the people who live here have got now an up-close-and-personal look at what it really is to have a medically complex child.”
In fact, Nicole Zeitler credits the Hyattsville community with helping her family to get through some of their darkest times. She recalled a day when one of her biggest nightmares happened.
“I was at work and I got a call from a nurse, and she said, ‘Pierce turned blue,’” she said.
The Zeitlers immediately began to make their way home, but since Nicole was downtown and Ben was in Virginia at the time, they knew it would be awhile before they could get there. Nicole Zeitler said she called her neighbors, who went over to the Zeitlers’ house and were able to be there for Pierce while the nurse resuscitated him.
“I think that the people who live here will have a better understanding than most about this, about the issues that the Little Lobbyists are talking about,” said Nicole Zeitler. “But for the rest of America, it’s really, really important to have the basics of our reality explained because, really, despite the fact that no one really understands this, or very few people understand this, everyone is one diagnosis away from needing the protections of the Affordable Care Act and coverage for catastrophic medical complications.”
To learn more about the Little Lobbyists, visit http://www.littlelobbyists.org/.