Often when you see – or experience – something wrong in the world, you want to change it. There are countless ways to do that, from petitioning lawmakers to protesting on the street to personally helping and advocating for a single victim of injustice. There’s also writing a book, which is exactly what Lorina Troy did. She detailed how her youngest child was medically misdiagnosed as a victim of child abuse and the two and a half years her family spent fighting that charge. All to raise awareness of a growing problem in the U.S.
Lorina’s book, Miracles of Faith, starts optimistically enough with the story of her and her soon to be husband Jason going on a first date. They lived in southern California and eventually got married and had a son. When their son, Kainoa, was three years old, the family moved to Texas where Jason had been offered a good job working with a government contractor. They bought their first house and soon after had a second son, JJ. Everything seemed to be wonderful.
Unfortunately, shortly after taking JJ home from the hospital, he began vomiting a lot. Lorina and Jason took him to their pediatrician who diagnosed JJ with a stomach flu. They also noticed that his head was larger than other babies his age, but the doctor wasn’t worried about it. They took JJ home with some Pedialyte and waited for him to get better.
But JJ didn’t get better. The Troys took him to urgent care centers, hospitals, and ultimately a children’s hospital. Everywhere they went, doctors continued to misdiagnose him with a stomach problem or a virus. Eventually, between the vomiting and JJ’s ever swelling head, Lorina convinced a doctor to do an MRI. The MRI showed that the boy had fluid built up in the hollow areas of his brain. JJ would have to have surgery to release the fluid, but that wasn’t the worst part. The doctor that examined the MRI decided that the fluid buildup must have been from physical abuse.
Child Protective Services (CPS) removed both JJ and Kainoa from the Troy household. “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,” said Lorina. She was only allowed to see them twice a week for two hours each at a visitation center. Jason wasn’t allowed to see them at all because he was charged child abuse.
Jason was charged with two counts of felony child abuse, which carried sentences of five to 99 years. Due to the charges, he lost his job with the government contractor. As things progressed, Jason Troy began to question his own actions. “There was some doubt,” he says. “Like, was there something I did?”
Staunchly maintaining their innocence, the Troy family continued to press for answers. Finally, a medical expert in Maryland — more than 1,500 miles away — managed to properly diagnose JJ. He had benign external hydrocephalus, a rare condition where cerebrospinal fluid (CSF) can build up in the brain, leading to swelling. A buildup of CSF can put pressure on the brain causing many symptoms in infants, including a rapid increase in head circumference, fussiness, tiredness, poor appetite, vomiting, eyes that stay looking down, seizures, and slowed development.
Hydrocephalus can be present at birth and is the result of genetic abnormalities, problems with fetal development, or complications at birth. Hydrocephalus affects about 1 in every 500 babies in the U.S. Unfortunately, a buildup of cerebrospinal fluid in the head can also be a symptom of a traumatic brain injury, most often caused in babies by blows to the head or being severely shaken. This can be interpreted as physical abuse if other symptoms are not considered, as in the Troy family’s case.
Once a correct diagnosis was found for JJ, the charges against Jason were dropped. But between legal and medical bills and lost wages, the Troys lost about $80,000 – on top of selling their new home. In all, the ordeal had taken almost three years.
Sadly, the Troy family is not alone in their story of misdiagnosis leading to children being removed from homes. Families all over the country have contacted Lorina with their own stories. Everything from brain injuries to broken bones to skin conditions have been diagnosed as child abuse when they were, in actuality, medical issues. Lorina has become an advocate for families like hers that have experienced the devastating results from a child’s misdiagnosis.
“There were times when the loss of our children, the unbelievable accusations against my husband and the feeling that we were powerless to right the wrongs – were overwhelming,” Lorina says. “But we went through the most challenging events of our lives and it has made us stronger. Now, we can take our terrible situation and what we have learned and help others in similar situations.”