Nathaniel Rankin’s airway is the size of a pinhole. The 2-year-old breathes through a tracheotomy — a tube inserted into his windpipe through an incision in his throat. Caregivers must clean it several times an hour and watch him constantly, even while he sleeps, to make sure it does not get blocked or pulled out. He will immediately suffocate without it.
What if the active boy is hurt in a bad accident? What if his mother is in a panic? What if his caregivers are incapacitated?
The first to respond to an emergency call at his home would be the firefighters and EMTs at the Saline Valley Fire Protection District’s station in Fenton. They must know what to do.
“Nathaniel literally lives around the corner from you,” Shelby Cox told the uneasy group of firefighters. “You guys will respond to that call. You will be the first to take care of him.”
The firefighters were participating in a new program co-founded by Cox, EMS liaison for Cardinal Glennon Children’s Medical Center, to train first-responders to care for the unique and challenging conditions of a growing number of children with special needs.
Over the past 50 years, the number of children living with disabilities has tripled, largely because health care advances have helped children survive with conditions that used to mean death, according to a 2011 report by the American Academy of Pediatrics.
Children and adolescents have had the highest growth rate of disability of any age group during the past decade: About one of every seven children younger than 18 in the U.S. can be classified as having special health care needs. These include developmental delays, seizure disorders, cerebral shunts, heart problems, autism or any other atypical disease or syndrome.
Historically, hospital-based or institutional care was the only option for most children with complex medical conditions or significant emotional needs. But more recently, community-based programs provide care for children in their homes. While this has many benefits, the report said, it has brought new challenges.
Many may assume first-responders are experts at handling any type of emergency, Cox said, but the reality is training has not caught up with the advances keeping children alive and living at home.
Cox showed the firefighters a video of a “standard trache change.” It was a mother replacing her toddler’s tracheotomy tube with a clean one — routine care for her, but frightening for anyone else to watch as the child squirms and seems to choke.
“That is not standard, I will tell you right now,” said Saline Valley fire Capt. Kevin Wissman.
Cox told them to imagine if it were an emergency, if that child had not been able to breathe for a while.
The first thing parents hear when calling their pediatrician is, “If this is an emergency, hang up and dial 9-1-1.”
“Parents are under the impression that we are as comfortable as specialists taking care of them in hospitals, yet we are not,” said Cox, also a part-time paramedic with the Rock Township Ambulance District.
Cox asked the group at the Saline Valley firehouse if anyone had ever cared for a patient with a tracheotomy, and the response was silence. “A lot of us are not comfortable with adult tracheotomies,” she said. “And when it comes to pediatrics, we are really uncomfortable.”
Tricia Casey, a paramedic with Rock Township who founded the training program with Cox, said demands on emergency medical services have changed dramatically since the ’70s, and the curriculum has not caught up.
For example, she was taught if a pregnant woman is in labor before 26 weeks, she should be taken to the emergency room instead of labor and delivery. “But now these kids are surviving,” Casey said, “and they are surviving with traches, ports and shunts that we are not so familiar with.”
Doctors and staff at Cardinal Glennon sounded the alarm when patients with tracheotomies suffered complications as they were transported to the hospital. They asked Cox to see how care could be improved. She found that paramedics needed detailed information and preparation before an emergency takes place.
“The pre-hospital personnel take pride in the care they deliver and don’t want to feel uncomfortable in any situation,” said Dr. Steven Laffey, a pediatrician at Cardinal Glennon. “As they saw more of these cases, they were asking for the education and information.”
Cox worked with Casey, who also has a special-needs child, to develop STARS — Special Need Tracking and Awareness Response System. Each special-needs child within a district is identified by a number, which emergency dispatchers can relay to ambulance crews.
First-responders can look up information by the child’s number and quickly learn the child’s diagnosis, medications, baseline vital signs, common emergencies, effective management and what procedures to avoid. The information can be as detailed as needed — even including a typical hiding place, a favorite stuffed animal or whether sirens cause anxiety.
Cox and Casey have come across a few similar programs in other states, but they involve caregivers giving responders an information sheet. “You can’t just get handed a piece of paper when going in,” Casey said. “It’s too late.”
A $28,000 grant through the city and county health departments is covering the cost of supplies and training.
“It is imperative that appropriate care for these children begins when paramedics arrive,” Laffey said.
Cox and Casey created the system last summer, and already a dozen St. Louis area districts have signed on.
“As emergency providers, we need to be well informed and ready for anything, even the unexpected, and we need to be able to provide care for all the members of our community,” said Sabine Sagner, clinical supervisor for Christian Hospital EMS, which is identifying special-needs children in the area it serves.
When a patient leaves Cardinal Glennon, Cox — with the family’s permission — notifies the appropriate ambulance district about the child’s unique health care needs. Then she’ll inform the district about the special-needs database and training.
“The common response is, ‘Please come here and tell us everything about STARS,’” she said.
Each district can find other special-needs children they serve, and a coordinator will meet with their families to get information. Cox and Casey will provide whatever specialized training a district wants. It’s a lot of extra work, but many districts are willing to put in the time.
“It’s of the utmost importance,” said Scott Keller, a paramedic with the St. Charles County Ambulance District, the largest in Missouri, with 370,000 residents in 592 square miles.
Districts across the state and small community hospitals have asked to learn more about the program, Cox said. “It’s really catching on, and we are excited about that.”
Cox said their goal is to have a statewide database of children with special needs for dispatchers and first-responders. Currently, each district has access to information only on children living within their district.
Back at the Saline Valley firehouse, Cox explains how to flush a trache tube with saline. If that doesn’t work, the tube needs to be replaced. If the responder can’t get in a new tube, the last option involves placing an oxygen mask over the throat incision.
“We don’t have the training. We need to push this,” said Wissman, the fire captain. “We need to do whatever it takes.”