When Sen. Tom Cotton (R-Ark.) introduced legislation recently requiring hospitals to disclose their ability to save premature babies, he exposed every parent’s worst nightmare. We’re gambling with our children’s lives at hospitals that may not be equipped to save them. Cotton’s Neonatal Care Transparency Act is vital, but it’s part of a bigger issue — 2,100 children dying annually in emergency rooms that are also unprepared — and these emergencies can strike any family, any time.
“It’s only a common cold, you can take her home — I need to get to the real emergency down the hall.” These dismissive words have haunted me for nearly 18 years, costing my only daughter Rebecca her life. She wasnine days old.
My daughter’s story underscores the same national crisis that prompted Cotton’s legislation: most hospitals are not prepared to care for our kids when it matters most. Rebecca was one of over 2,100 children whose lives could have been saved if their ERs were prepared for pediatric patients.
Over 30 million children visit the ER annually, yet the median grade for pediatric emergency readiness in hospitals was aD+, according to a National Pediatric Readiness Project assessment. These systemic failures have been well-documented in the medical community for decades — a crisis hidden from parents until it happens to them.
On July 20, 2006, Rebecca suffered labored breathing, decreased appetite and extreme lethargy. We rushed her to the Pediatric Emergency Department at our local ER, she was diagnosed with a cold and sent home, despite pleading for help. Rebecca died less than 24 hours post-discharge. Her autopsy listed the cause of death as Enterovirus B and Sepsis, which proper pediatric training could have recognized and treated. She could still be alive today.
We learned we are not alone. Three-year-old Avery from Texas died after being improperly intubated with adult-sized breathing tubes. Four four-year-old Mason from Detroit suffered long-term lung damage from delayed diagnosis of a bowel condition. Lack of pediatric training, equipment and coordination have led ERs and EMS services to misdiagnose or not properly care for young patients whose bodies require different needs than adults.
If we require transparency for preemies in neonatal intensive care units, why not for the 30 million kids who visit ERs annually? We wouldn’t board a plane with our family if we knew the airline lacked proper training or equipment — yet we entrust our children’s lives to hospitals without asking these same questions. If over 2,100 Americans died in plane crashes annually, we’d demand answers and proper training.So why do we allow our health care system to claim thousands of children’s lives?
While policymakers propose expanded child tax credits, $5,000 “baby bonuses” and affordable In vitro fertilization access to support American families, they critically overlook a fundamental safety crisis affecting our children today. Cotton’s transparency bill recognizes that parents deserve to know their hospital’s capabilities before emergencies strike. This principle should apply to all pediatric emergencies. Shouldn’t we prioritize protecting our kids’ most basic right — to survive a medical emergency?
The solution is both lifesaving and incredibly cost-effective. While Cotton tackles neonatal intensive care units disclosure requirements, implementing comprehensive pediatric readiness standards costs just $0-$12 per child — far less than other family policy proposals currently under consideration. Proven guidelines and affordable solutions created by medical experts to prepare all emergency systems and staff for pediatric emergencies exist, yet 83 percent of U.S. hospitals are unprepared and unaccountable.
My husband and I created R Baby Foundation in Rebecca’s honor, to ensure every child receives the best care possible, so no other family has to endure what we experienced. Rebecca would have turned 18 this year. I missed the opportunity to know my daughter because she never had a fighting chance to live. Instead of celebrating her life, I mourn what could have been, learning to live with a broken heart.
Lawmakers who support the Neonatal Care Transparency Act should also champion comprehensive pediatric emergency preparedness standards — because every child, not just premature babies, deserves hospitals that can save their lives. Congress must pass legislation requiring all hospitals to meet basic pediatric readiness standards, just as Cotton’s bill requires neonatal intensive care unit transparency. More than 2,100 child deaths annually are not just statistics — they represent real children, real families forever changed. Families like mine.
Complacency comes with devastating consequences, and we can no longer ignore the urgent need for change within pediatric emergency health care.The real emergency is not “down the hall,” it’s happening right in front of us,in every state and it’s completely preventable. Politicians and changemakers need to know we’re holding them accountable. I urge every member of Congress to support pediatric emergency preparedness legislation this session. We owe this to our children, the 2,100 children who will die this year without fixing this crisis, and I owe this to Rebecca.
Phyllis Rabinowitz is co-founder and president of R Baby Foundation, a national organization dedicated to improving pediatric emergency care standards.
