When you have a headache, you know there are many possible causes, ranging from the mild to the very serious. When you see your doctor, she will likely ask you detailed questions about how long the headaches have been taking place, what type of pain you are feeling, when they occur, and what other symptoms you’re experiencing. Without a thorough assessment and examination, it would be absurd for your doctor to diagnose you with a brain tumor or the flu, both of which can give you a headache. And, of course, the treatment for a brain tumor and a virus would look very different.
Diagnosing the cause of the headache would require further testing and analysis. It may require a second, or even a third, medical opinion. It would seem to be obvious that sometimes one test or one opinion may be incorrect so there should be safeguards to cross check that information with additional information. Unfortunately, this is not always so when children are involved.
Lorina and Jason Troy moved from California to Texas just before their second son was born. The baby, named JJ, was born in one New Year’s Eve, 2014. At the time, everything seemed normal, but that would soon change. JJ’s head was larger than it should be, and he began vomiting regularly, although no one connected the two until much later. Lorina took him to their pediatrician, but the doctor thought it was only a case of a stomach virus. He said to keep the baby hydrated and left it at that.
But the vomiting didn’t stop. The Troys took their baby to urgent care centers and eventually a children’s hospital. Everyone thought it was just a stomach virus. But Lorina thought it was something more. She finally convinced a doctor to do an MRI because JJ’s head continued to get larger. It was when to doctor got the MRI report that everything changed for the Troy family. The doctor saw that there was fluid built up in JJ’s head. Although this could be the sign of a medical condition, the doctor assumed it was due to “Shaken Baby Syndrome” resulting from physical child abuse.
The doctor dismissed the Troy’s denial and request for a second opinion. “I told him, my son has never been hurt in any way, could this be anything else? And he told me, yes, but since he’s a baby and can’t talk, we are just going to go with abuse and walked away,” Lorina Troy said. As a result, JJ and his older brother, Kainoa, were taken from the Troys by Child Protective Services (CPS) for five months. “A day I would never forget was the day our kids were put in foster care. I sobbed uncontrollably, seeing my boys cry as the officials took them away. I missed my kids every single day. Our house became as quiet as a graveyard.”
Soon after, her husband Jason, was charged with two felony charges of child abuse, which carry a sentence between five and 99 years. These charges caused him to immediately lose his government contractor job. The couple searched for a lawyer who would take the case. They were forced to sell their home to pay for attorney expenses. The Troy family ultimately ended up losing over $80,000 in fees, medical expenses, and lost wages.
Over the following two years, JJ was seen by numerous doctors but continued to be misdiagnosed. Eventually, a doctor in Maryland discovered JJ had Benign External Hydrocephalus. Hydrocephalus is a condition where cerebrospinal fluid builds up in the cranium, causing an enlarged head among other symptoms like vomiting, seizures, and breathing difficulties. It can be present at birth and is the result of genetic abnormalities, problems with fetal development, or complications at birth. With the new diagnosis, the charges against Jason were dropped, and the Troys were reunited with their children.
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.
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.
The Troy family is trying to heal from the trauma of separation, legal battles, and financial loss. Lorina has become an advocate for families like hers that have experienced devastating results from a child’s misdiagnosis. She lobbies lawmakers in Texas, California, and Washington D.C. to change laws on getting second medical opinions and the role of CPS in instances like these. She has now written a book, titled “Miracles of Faith,” that goes into the details of her family’s journey through the medical and legal systems and how their faith saw them through it all.