Chapter 17: Why Millions of Kids Are Misdiagnosed and Harmed Annually

What You Can Do For Your Children. Now.

Driving home with my then three-year-old son Brandon in the back seat of our car, I heard, “Mommy, my chest hurts.”

We had been well trained for this; at two, Brandon had been diagnosed with severe asthma, a condition that didn’t seem to improve despite his daily doses of inhaled steroids and bronchodilators. “How bad is it? What kind of animal?”

“There’s a hippo on my chest.”

I slammed on the brakes, made an illegal U-turn towards the local emergency room, and parked haphazardly outside the hospital doors. Snatching Brandon from the back seat, I ran into the ER, shouting, “There’s a hippo on his chest. There’s a hippo on his chest.”

The triage nurse took him out of my arms. “I’ve got him,” she said. When I returned a few minutes later, hyperventilating from fear and the sprint from the parking lot, I found Brandon sitting on an examining table, swinging his legs and eating a cookie.

“He’s fine,” she said. “No bronchial sounds, no symptoms.”

I asked him, “Does your chest still hurt?”

“Yeth” he said, spraying lisp-driven cookie crumbs.

The nurse turned to him and asked, “Do you have a hippo on your chest?”

“Yeth.”

She looked at me pointedly, then asked him, “Brandon, how big is the hippo?”

Brandon held up his thumb and forefinger about an inch apart. “This big.”

Brandon’s tiny hippo wasn’t just the product of his imagination. It was a glaring sign that perhaps we were treating the wrong thing. For a year-and-a-half, we had scrutinized and medicated him, jumped at every cough, and trained him to report any new symptoms.

And he was ill. He just didn’t have severe asthma. So, what else could it be?

Children Are Misdiagnosed And Harmed More Than Adults

Approximately 50 to 100 million times each year, American adults are misdiagnosed. That number covers all types of care in all types of locations. Children have most of the same diagnostic issues as adults do. But, children offer more challenges. While no system-wide analysis has been done for misdiagnosis of American children, lots of studies have examined the issues. Here are a few:

• Autopsy studies among children who died in intensive care (PICU) found a 10–23% rate of missed major diagnoses

• A retrospective (look-back) review of pediatric deaths reported diagnostic error rates of 8% to 25%

• An emergency department study learned 15.8% of children had delayed diagnoses

• Approximately 28% of pediatric cancer diagnoses are delayed

It adds up to millions of kids who are misdiagnosed, a range of 4 million to 11 million children. Which means you probably know a child this happened to. And if the diagnosis is wrong, the treatment plan and the medications are wrong, too.

Why Are Kids Misdiagnosed?

The top four reasons children’s diagnoses may be wrong or delayed include:

1. Complexity and Communication: One factor is the sheer breadth and complexity of what pediatricians need to know. Besides assessing sick children, they must know about the physical, neurological, and emotional development of children at every stage, from newborns to teens. They’re also gatekeepers to almost every other specialty. As with adults, there are only a few hundred symptoms and over 14 thousand medical conditions.
   
   For example, two common symptoms for children are fever of unknown origin and chronic abdominal (belly) pain. The list of possible causes for both are huge. It could be due to something benign, like an upset stomach or teething, or something more serious requiring immediate attention.
   
   Yet, kids may not be aware of or able to describe the details that help doctors separate an ordinary occurrence from a true emergency. Getting a useful medical history from children –– especially from very young, chronically ill, and older children –– can be especially challenging. Adults who have been healthy know their bodies well enough to easily tell when they’re ill. But children have more hurdles to telling the full story than most adults do. Very young children can’t explain what they’re feeling. Babies don’t speak and toddlers don’t have the right words. They’re dependent on parents or caregivers to recognize and then interpret their symptoms to a doctor or a nurse. Pediatricians should listen closely to parents’ observations to supplement whatever they can learn in an exam room.
   
   Older children and teens present a different set of issues. As kids become adolescents, they may withhold information about their lives that can have a significant impact on their health. This can include more serious things, like drug use and sexual activity, but it can also be something as seemingly that peculiar rash they presume is poison ivy. Hormonal development is generally weird to preteens; their bodies go through dramatic changes and they may clam up out of sheer embarrassment. That’s why best practice is for the pediatrician or family practitioner to talk with preteens and teens without their parents in the room, to try to develop trust and enable them to share.
   
   Chronically ill kids –– meaning their illness continues, isn’t easily cured and impacts their daily lives –– often don’t report a symptom unless it’s something painful or dramatic. Because they’ve been ill for a while, they don’t always know that they’re not supposed to feel this way, to have headaches all day, every day, for example. And even if they do recognize that they’re feeling off, they may simply fear sharing what’s happening. A friend just told me that as a chronically ill child, they didn’t share when they were in pain because they didn’t want to upset their parents anymore.
   

   

   
   Younger kids –– like Brandon –– also don’t understand context or scale when it comes to describing their chronic symptoms (or the size of a hippo). In retrospect, the keys to my son’s misdiagnosis should have been easy to recognize: He hadn’t improved despite the ever-increasing daily doses of medicine, and he hadn’t experienced the key symptom of bronchial sounds, even though he was still having trouble getting air.
   

2. Physician’s Attitude: Beyond the usual tumbles and falls, the boo-boos that can be healed with a kiss and a Band-Aid^®, beyond the normal childhood illnesses that sweep through classrooms as if by the power of suggestion, most kids do tend to be healthy. So, doctors may choose to reassure parents rather than investigate their concerns. Yet, the mindset that young children are rarely seriously ill is one main reason that they are more likely to be misdiagnosed than adults are. When doctors and nurses expect to see a healthy child with a common short-lived illness, they may miss the uncommon ones.
   

3. Biology: Children are not just little adults. Many children’s medical conditions look and feel differently so they need to be diagnosed and treated differently than adults are. Children are at particular risk of diagnostic delays because the way some serious illnesses present can be subtly different than how adult symptoms present. Even serious pediatric symptoms can be misinterpreted as far more common, minor illnesses.
   
   And children’s bodies are constantly developing so they’re a moving target to medical professionals. As their bodies mature, all their internal systems –– i.e., immune, neurological and hormonal systems –– change, too. That’s one big reason why when they’re improperly diagnosed, they experience harm at a much greater rate than adults do. For example, short delays in care can have long-term impact because kids don’t have the “physiological reserves” to accommodate injury or illness. Diagnostic delays put children at higher risk of illness complications. Trauma has an emotional impact on everyone, but it may harm a child’s well-being for the rest of their lives.
   

4. Unequipped and Overprescribed: This is a case where one size does not fit all. Most emergency departments (80%) don’t have kid-sized equipment necessary to diagnose and treat children. To be clear, you can’t use an adult sized intubation kit on a child who stopped breathing or restart a child’s heart safely with a defibrillator with adult sized paddles. Blood pressure cuffs, monitors set for pediatric levels, even tongue depressors need to be sized for newborns through older teens. Lack of the appropriately sized equipment contributes to the delay for 15.8% of children’s diagnoses in the emergency room. This also holds true for general hospitals, urgent care centers and ambulances.

   
   While people aren’t equipment, there is a national shortage of on-call pediatric specialists in emergency rooms. It’s the rare ER or community hospital in highly populated areas that has pediatric specialists –– like anesthesiologists, neurologists, gastroenterologists, etc. –– available. Yet, we know it’s important because pediatric survival rates improved by 15% when emergency departments were set up and staffed for infants and children.. In many rural areas, even if the nearest hospital still has a pediatric department, there are severe resource shortages. If you have a pediatric hospital or emergency site near you, count your blessings.
   
   Pediatric doses of medication are critical, too. While 41% of children take prescription medicines each year, more children experienced preventable medication errors (31% vs. 13% of adults). That translates to 7.5 million medication errors annually. One big concern is overdosing kids with adult-sized dosages. Children’s dosages are keyed to their weight. There are also many medicines that are inappropriate for infants and young children. Despite the efforts of pharmaceutical companies and hospitals, errors in “prescribing, dispensing, and administering” was observed in 5–27% of medication orders for children.
   

7 Things You Can Do For Your Kids Now

There are steps you can take to help your child before any trouble arises. These tips also work if your child is in the middle of a diagnostic journey today.

1. Trust your gut. As parents, we must balance between trusting and respecting the doctor’s experience, and trusting and respecting our knowledge of our own kid. When something is off with your kid, put it into context to distinguish your child’s symptoms today from their normal activity. If you’re told your child is fine, is it dismissal or reassurance? Chapter 10 covered how to handle being dismissed or ignored by your doctor. The same tactics apply for your child. Be polite but firm, and advocate for your kids. No one else will.

2. Find a pediatric hospital, urgent care or emergency room nearby before you need one. There are 224 Children’s Hospitals in the US but they’re in just 17 states. If your state isn’t one of them, search online for the phrase “pediatric urgent care.” CMS also has a list of rural health centers that you can search by state and then search for the words “pediatric” and “family”

3. If your child isn’t showing signs of improvement, get a second opinion.

4. Sign up for the doctor’s or hospitals’ patient portal and check your child’s chart thoroughly. Is the information correct? Are the medications and medical history correct? Read it, correct it, and tell the doctor or the staff. There won’t be time in an emergency to correct the record.

5. Important test results can slip through the cracks and lead to misdiagnosis and lack of treatment. Keep track of any tests that are done on your child. That includes blood tests, urine tests, x-rays, and any other type of scan. Whenever your child has a test, simply ask when the results are expected and note it in your calendar. If you don’t get called or emailed with results, call and ask about them. Remember, “No News is No News.”

6. If you have a planned appointment, there is a valuable free tool you can start using today. Download The Eight Characteristics of a Symptom Tool and fill it out in advance.

7. If you’re using the internet to look for more information, be sure to use reliable and trusted sources. The American Academy of Pediatrics’ (AAP) Healthy Children is a great place to begin. So is Nemours KidsHealth and TeensHealth.

What We Did For Brandon: We brought Brandon to Yale Children’s Hospital for a second opinion despite it being over an hour away. They were alarmed at the enlarged size of his lungs, which filled his chest cavity because of his constant struggle for oxygen. “He has the lungs of someone who’s climbed Mount Everest,” the pediatric pulmonologist told us. After two full days of exams, careful questioning, and tests—including a CAT scan—she found the answer: Every one of Brandon’s sinus cavities was blocked so he was unable to breathe through his nose.

The cause? A series of under-treated ear and sinus infections. Instead of a lifetime spent constantly fighting for oxygen and taking more than a dozen doses of various medicines each day, Brandon was healed by a simple 35-day course of antibiotics. Sadly, this was just one of his four misdiagnoses. The next one lasted over eight years and nearly caused his death at 15.

Next Up –– Chapter 18: Medicine’s Biggest Blind Spot is Still Women’s Bodies. What Can Women Do To Protect Themselves?

©Helene M. Epstein 2025