Sometimes people become advocates for something they are passionate about. Sometimes they become advocates for something that happened to them. Lorina Troy is in that second group. She has become a strong advocate on the subject of medical misdiagnoses leading to claims of child abuse because her family went through just such an ordeal themselves.
Lorina and Jason Troy moved from California to Texas just before their second son was born. The baby, named JJ, was born in early 2015. At the time, everything seemed normal, but that would soon change. JJ’s head was larger than it should be for his age 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 found a doctor that agreed 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 Lorina and Jason by Child Protective Services 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.”
But things didn’t stop there. Jason Troy was charged with two counts of felony child abuse which carried a potential sentence of between five and 99 years. He also lost the well-paying government job he had because of the charges. And because of the nature of the accusations, Jason was not allowed to see or be around his kids, even when they were returned to Lorina 5 months later.
Throughout this, Lorina and Jason were trying to find a lawyer that could help them fight the charges and prove Jason’s innocence. They went through three different attorneys. At the same time, the Troys were also trying to find out what was wrong with JJ. They had to sell their house to cover the attorney fees. JJ had also required a couple brain surgeries during this time. Even after selling their house, the Troys ended up losing $80,000 in legal and medical costs.
Lorina had not given up on getting JJ correctly diagnosed. Although it was the Troy’s third attorney that found the piece of evidence that would ultimately lead to a correct diagnosis. In medical records, he found that there had been a complication during JJ’s birth. No doctor or nurse had ever mentioned this to the Troys.
With this evidence, a doctor in Maryland eventually 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. From the time the original misdiagnosis occurred until Jason was exonerated was almost three years.
Since then, Lorina Troy has written a book about the family’s experiences, titled “Miracles of Faith,” and has shared her story with lawmakers and news outlets. She has also met with U.S. Senator Ted Cruz and Texas Representative James Frank in an effort to raise awareness and change the laws surrounding child abuse diagnoses. Frank, the chair of the state House of Representatives Human Services Committee, even invited Lorina to speak at a legislative hearing about misdiagnoses that lead to child abuse accusations.
The Troy family has also gathered media attention and were one of the families featured in Do No Harm, a series of investigations by NBC News and the Houston Chronicle looking at misdiagnoses that lead to unfounded claims of abuse. Lorina and her family are continuing to try and make changes to the laws and procedures so that it can protect families from going through this situation.
Lorina wants to make physicians, hospitals, judges, law enforcement and Child Protective Services aware that children can be misdiagnosed with child abuse when the child has a medical condition. Lorina, as well as other parents, some pediatricians, and a few lawmakers, believes a nationwide law needs to be passed that would give a parent the right to get a second opinion on their child’s health from a medical expert, especially when there is no other evidence of child abuse.