As a researcher and medical device designer, I’ve spent years immersed in pediatric hospitals and homes, observing and listening. One moment from my recent research still keeps me up at night.
A mother described how her toddler stopped breathing one afternoon at home. Instead of calling 911, she grabbed a faulty suction machine, the only one Medicaid had provided and prayed it would keep working long enough to clear her son’s airway. The hospital-grade unit she needed exists, but her Medicaid plan wouldn’t cover it. Thankfully, it worked — this time.
That story is not an outlier. Over the past two years, I interviewed 20 families across the country caring for children with tracheostomies — surgically created airways that allow them to breathe — along with clinicians, hospital case managers, and reimbursement experts. What I found was shocking: Medically complex children are sent home from hospitals requiring ICU-level support, but without the training, staffing, or equipment needed to provide it safely.
What’s worse: Parents are expected to fill in the gaps. And when they can’t? They improvise.
Children with a tracheostomy often rely on ventilators, humidifiers, pulse oximeters, feeding pumps, and suction machines to stay alive. They require 24/7 vigilance, emergency response skills, and precise medical routines. But after hospital discharge, families are left to navigate a fragmented system of insurance approvals, equipment vendors, and wildly inconsistent Medicaid coverage.
One mom told me her home nurses were so undertrained she eventually let them go and took over care herself. Another shared how she traded used medical supplies in a Facebook group because her durable medical equipment (DME) supplier routinely shorted her on monthly shipments. A Florida mom said her son used the same two trach tubes for 20 months, even when tubes are supposed to be changed weekly, because Medicaid and her DME wouldn’t approve more.
In these groups, I saw families mailing supplies across state lines, zip-tying ventilators to kitchen storage carts, and buying expired trach tubes on eBay.
This is not just a story of equipment failure — it’s a systemic failure in how we fund, deliver, and oversee home health care for medically fragile children.
DMEs are reimbursed by Medicaid based on billing codes — some of which haven’t been updated in decades. That means suppliers often choose the cheapest item that fits the code, regardless of its reliability. Doctors may prescribe hospital-grade suction machines or heated vent circuits, but there’s no requirement or financial incentive for the DME to deliver them. Many don’t.
Families also described a revolving door of home nurses with little to no training in pediatric trach care. One mother said, “I had to teach them everything, even how to manage oxygen. Eventually I just stopped sleeping and did it all myself.”
Training for parents varies just as widely. One Florida couple told me their hospital provided a one-hour “boot camp” using an infant mannequin. “That’s it?” the dad asked. “That’s it,” the nurse replied. Another parent spent an extra month in the hospital to to practice trach changes before being discharged with her newborn. This highlights the significant variation in parent training programs across children’s hospitals.
When things go wrong at home it’s often because the parent didn’t have what they needed. One grandmother told me about the time her granddaughter’s trach tube wouldn’t go back in during a change. She had to cover the stoma (the hole in the throat), start bagging the child, and wait for an ambulance. At the hospital, even trained staff struggled to reinsert it. She and her daughter both cried, she told me. “I think we still have PTSD from that experience.”
In the face of caretaking obstacles, many parents are becoming innovators. Some are sewing antimicrobial trach pads and ventilator tubing covers to minimize condensation buildup and muffle noise, and selling them on Etsy. Others are building YouTube channels with tutorials on how to assemble “go bags” or rig pulse-oximeter monitors that won’t fall off wiggly toddlers.
Some parents built mobile ventilator holders so their children could walk or crawl while still connected to a life-sustaining medical device.
Parents are also creating less-irritating trach ties, repurposing products like breast pump shields and creating their own ventilator stands to manage the care of their child.
These families aren’t “making do.” They are designing smarter systems with better usability because no one else will.
We should not be asking parents to operate hospital-level care on a budget of duct tape and ingenuity. We need federal and state-level reform that acknowledges the realities of at-home pediatric care. Here’s where to start:
- Update Medicaid reimbursement codes to align with current equipment performance standards rather than outdated pricing benchmarks.
- Establish reimbursement and oversight mechanisms that incentivize DME suppliers to prioritize physician-ordered, evidence-backed devices over defaulting to lowest-cost alternatives.
- Standardize hospital training for families using simulation-based programs and real-world scenarios.
- Invest in peer support and navigation services, especially for parents in rural areas or without access to post-acute facilities.
- Partner with parents in the design and testing of pediatric medical equipment. They are already building what the market has ignored.
This isn’t just about health equity, it’s about safety. When a trach falls out or a vent fails at home, parents have seconds to respond. Every shortcut in the system will compound into a crisis.
I wrote this article because what began as a research project on how families manage their child’s complex care at home revealed an important insight: The health care system has shifted hospital-level responsibilities onto families, often without equipping them with the training, tools, or support needed to do it safely.
These parents deserve better than a suction machine that breaks and a shrug from their insurer. They deserve equipment that works, home nurses who are trained, and a system that sees them not as afterthoughts but as the frontline clinicians they’ve been forced to become.
Ethically, we must confront the growing disparity between the technological advances that save these children’s lives in hospitals and the systemic neglect they face once discharged. If we have the tools to sustain life, we have a responsibility to ensure those tools are accessible, functional, and safe at home — not just in the ICU.
Jules Sherman is a researcher and medical device designer whose work is shaped through collaboration with clinicians, patients, families and other key stakeholders. All photos have been published with the informed consent of the parents of children with tracheostomies and other medical complexities.
