Over 12 million Americans experience a medical diagnostic error each year. One study found that around one out of every 20 outpatient experiences results in a misdiagnosis. This includes people that receive the wrong information about the cause of their illness, people that have treatment delayed because of an error, or people that are treated for something they don’t have. It is believed that the rate of misdiagnosis in children is even higher.
Babies and young children simply can’t explain their symptoms if they are sick. As a parent, it can be very difficult to pinpoint what’s wrong even when a child voices their symptoms. “I have a tummy ache” or “my head hurts” can mean innumerable things, which is why we count on doctors to recognize symptoms, make an accurate diagnosis, and carry out an effective treatment plan. Unfortunately, this may not happen as it is supposed to. In fact, medical misdiagnosis is among the most common forms of malpractice among pediatricians and other doctors providing care for infants and children. The tragedy often comes when a child is left with the burden of complications caused by pediatric misdiagnosis, which can haunt them and their parents for the rest of their lives.
Data compiled a few years ago shows 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. 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 the little that is known about the full extent of adult misdiagnoses, even less is known about how misdiagnoses affect children’s health.
A study surveying pediatricians showed the primary reasons for medical misdiagnosis in pediatrics include:
- Failure to conduct a thorough medical history
- Failure to complete a comprehensive physical examination
- Failure to thoroughly review a child’s chart
- Failure to follow-up on abnormal diagnostic tests
- Inadequate care coordination among primary doctors, specialists, and others who may be involved in diagnosis and treatment
But what are the outcomes of these misdiagnoses? It can lead to permanent injury, accusations of child abuse, and even death. In a recent study published by the Doctors Company, the type of medical errors that they found varied among age groups. However, among all four age groups, brain injuries were the most frequently reported pediatric medical error. Among each age group, brain injuries accounted for:
- Newborns – 48%
- 0-1 Years – 36%
- 1-9 Years – 15%
- Teenagers – 11%
Lorina Troy’s youngest son was one such infant that had a brain injury misdiagnosed as child abuse.
When Lorina had her second son, she did not expect her child’s medical issues to lead to years of turmoil, but that’s exactly what happened. Even before her son, JJ, was born, there were indications of problems. Near the end of her pregnancy, a prenatal ultrasound showed that JJ’s head was two weeks larger than it should have been at the time. However, no doctors mentioned that there was any problem.
JJ’s head was still too large when he was born, and it continued to grow larger afterwards. When her son started vomiting a lot, Lorina took her child to their pediatrician. It was here he was first misdiagnosed as simply having a stomach virus and they were sent home with Pedialyte®. The vomiting continued, so Lorina took JJ to urgent care and ultimately a children’s hospital. All agreed with the first pediatrician’s diagnosis.
It took two and a half years to get a correct diagnosis of Benign External Hydrocephalus. Hydrocephalus is an abnormal accumulation of cerebrospinal fluid (CSF) in the cranium which can cause an enlarged head among other symptoms. However, when doctors first did an MRI on JJ, they saw what they assumed to be the result of child abuse instead of a medical issue. This began the family’s heartbreaking ordeal of losing custody of their kids, JJ’s father being charged with felony child abuse which caused him to lose his government job, and financial ruin. Eventually, Lorina regained custody of her children and JJ received a correct Hydrocephalus diagnosis.
Other children have suffered through developmental delays, brain damage, chronic health problems, foster care, and death. Their families are left to deal with the trauma these outcomes cause as well as the financial costs attached to them.
Parenting is not easy, and those interested in being foster parents should be aware of the issues they may face. In many states, it may be necessary for those hoping to be foster parents take Foster Parent Licensing training first.
Many of these families are lobbying for changes to the legal and medical systems in the U.S. Some want automatic second opinions in the case of child abuse diagnoses. Others want the CDC or some medical organization to start tracking incidences of childhood misdiagnoses. And a few simply want apologies.