When Parents Are Put In Jeopardy From Misdiagnosis Nobody Wins

Most kids are healthy most of the time. 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, kids do tend to be healthy.

However, the mindset that young children are rarely seriously ill is one of the main reasons that they are more likely to be misdiagnosed than adults are. That’s on top of all of the ways that approximately 10-20 percent of American adults are misdiagnosed every year. When doctors and nurses expect to see a healthy child with a common short-lived illness, they may miss the uncommon ones. The top reasons young children are susceptible to a diagnosis that’s wrong or delayed include:

  • Attitude: Since most children are healthy, and most illnesses resolve on their own, doctors may tend to reassure parents rather than accept concerns are real
  • Biology: Young children’s bodies and systems are radically different than adults, so they present and respond in unexpected ways
  • Unequipped: Most children’s emergency room visits are to community or adult hospitals that often don’t have needed kid-sized equipment or pediatric experts. Urgent care centers have similar issues.
  • Communication: Young children don’t understand or know what is wrong so they’re dependent on parents or caregivers to recognize and then interpret their symptoms

An estimated 12 million Americans a year are misdiagnosed with a condition they don’t have. In approximately half of those cases, the misdiagnosis has the potential to result in severe harm. Misdiagnoses can have serious consequences on a person’s health. They can delay recovery and sometimes call for treatment that is harmful. Approximately 40,500 people who enter an intensive care unit in one year, will die due to a misdiagnosis.

Misdiagnosis happens all the time. It is an enormous problem, the hidden part of the iceberg of medical errors that dwarfs other kinds of mistakes. Studies repeatedly have found that diagnostic errors, which are more common in primary-care settings, typically result from flawed ways of thinking, sometimes coupled with negligence, and not because a disease is rare or exotic.

Because the diagnostic process can involve many medical personnel and procedures, identifying the true rate of error is nearly impossible. There are no health-care organizations tracking diagnostic errors. In addition, the small amount of research that exists is almost entirely limited to adult patients. This means that as little as is known about the full extent of misdiagnoses, even less is known about how misdiagnoses affect children’s health. It is believed that children are misdiagnosed more than adults.

While pediatricians aren’t sued for malpractice as often as most other specialists, they do get sued for misdiagnosis far more often than any other group. Data compiled a few years ago showed that misdiagnoses accounted for an astounding 61 percent of all malpractice suits against pediatricians. One survey of more than 1,300 pediatricians in the journal Pediatrics, showed 54 percent admitted to making a diagnostic error at least once or twice each month.

And children’s health isn’t the only thing that can suffer from a misdiagnosis. There seems to be a rising number of medical issues being misdiagnosed as child abuse. There are a growing number of stories like Lorina Troy’s. Lorina’s second son, JJ, had been born with a larger than normal head and it continued to rapidly grow after birth. After several misdiagnosis, Lorina managed to get a doctor to do an MRI. This showed a buildup of liquid in JJ’s head. The doctor assumed this was due to physical child abuse. 

This resulted in Lorina temporarily losing custody of her children and her husband being charged with felony child abuse. Eventually JJ was correctly diagnosed with Benign External Hydrocephalus, but it took almost three years. Charges against Lorina’s husband were dropped, but by that point, he had lost his job, they had to sell their house and they still ended up losing $80,000 in legal and medical costs. Of course, that was in addition to the mental trauma both parents and children suffered throughout the ordeal.

Is there anything that parents can do to reduce the chance of misdiagnoses of their children? There are a few things that might help.

  1. Sign up for the doctor’s or hospitals’ patient portal and check the records thoroughly. Is the information correct? Are the medications and medical history correct? Read it, correct it, and tell the doctor or the staff.
  2. Important test results can slip through the cracks and that may 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. 
  3. Trust your gut. You’re the ones who know and care about your child the most. All of the experts encourage parents to speak up if they feel their child’s symptoms aren’t getting enough attention or if there’s any confusion between what the family is saying, and the medical professional is hearing.
  4. If your child isn’t showing signs of improvement, get a second opinion. Ask friends and family members in town for a recommendation of a pediatrician in a different practice or ask your current pediatrician for a specialist to give a second opinion.
  5. If you’re using the internet to look for more information, be sure to use reliable and trusted sources. 

These steps may not avoid all diagnostic errors, but it could prevent some. In cases such as Lorina’s, they probably would not have been enough to avoid the fallout of JJ’s misdiagnosis. She now works at raising awareness of child misdiagnosis and the devastating outcomes it can have. She lobbies lawmakers, advocates for legal changes, and talks to the press to get her and other parents’ experiences more exposure. She has written a book about her family’s journey through the medical and legal system, called Miracles of Faith.

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