Working With Medical and Legal Systems that are Broken
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. But they feel the medical and legal systems have failed them. How was it possible for two loving parents to so quickly be labeled abusers and have their children taken away?
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.
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 also talks to the press to raise awareness of Hydrocephalus and stories of misdiagnosis like hers and many other families across the country.
Lorina says, “Our strength came from our faith, our prayer, and the love and support of family and friends. But we went through the most challenging events of our lives, and it has strengthened us.” 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.
