Benign External Hydrocephalus Is Commonly Misdiagnosed as Child Abuse

How can the diagnosis of a stomach flu turn into losing custody of your children? By a chain of misdiagnosis and failures in the medical and child welfare systems. In 2015, Jason and Lorina Troy had just welcomed their second son, JJ, into the world. His older brother was four years old when Lorina gave birth to JJ. Within months, the Troys would have both their children removed from their home and placed in foster care.

JJ had been born with a medical condition called Benign External Hydrocephalus, but this wasn’t noticed by doctors at the time. Only after JJ was taken home and started vomiting did Lorina notice that his head was growing at an alarming rate. At first, she took JJ to their pediatrician who diagnosed JJ with a simple stomach flu. He did not get better. Lorina then took him to other doctors and finally a children’s hospital. 

All continued to diagnose a stomach flu and ignored JJ’s large head. Eventually, she convinced a doctor to give JJ a MRI. It found fluid built up in his cranium. This is the main symptom of Hydrocephalus, but it can also be the result of head trauma. Without further medical evaluation, the doctor misdiagnosed JJ as the victim of child abuse and called Child Protective Services (CPS). This resulted in CPS removing the Troy children from Lorina and Jason.

In a recent report, the Federal Administration on Children, Youth and Families estimated that there are nine abused children for every 1000 in the population. But the report also says that only 20% of child abuse investigations are substantiated. The rest - 80% - are cases in which the children are found to not be victims of maltreatment. What the report doesn’t count is the number of investigations leading to the state taking the child from the parents and placing them in foster care before the parents are ultimately cleared of abuse. No one knows exactly how many incidences of this kind of misdiagnosis occur each year.

NBC News along with the Houston Chronicle recently did a yearlong investigation highlighting the plight of parents accused of child abuse based on mistaken or overstated reports by doctors. They received hundreds of stories just like Lorina’s. Everything from brain injuries to broken bones to skin conditions have been diagnosed as child abuse when they were, in actuality, medical issues. These stories came from all over the United States proving the nationwide nature of this issue. 

For the Troys, things got worse before they got better. After the removal of Lorina and Jason’s children from their home, Jason was charged with felony child abuse. This resulted in the loss of his job. To pay for legal costs, the Troys had to sell their home. Throughout this time they were also paying for medical investigations into JJ’s case. All told, they lost over $80,000 in lost wages, attorney fees, and medical costs. It took 2 and a half years to get JJ the correct diagnosis, but when they did, the charges against Jason were dropped. 

Lorina has said there needs to be more awareness of the dangers of misdiagnosis within all the systems involved, from the medical system to law enforcement, to prevent false charges and wrongful convictions. She also stresses the importance of getting a second opinion, since she and other families she has spoken to were denied another medical opinion on their cases. “We understand that child abuse happens and we’re against that,” she said. “But there’s also the other side to it, where they quickly assume the worst, remove the children, charge the parents, put them in jail, and it’s just a huge nightmare. If they were to just hire a second medical expert to correctly diagnose the child, and then go from there, it would help so much. That’s why we’re really trying to push for this law to be changed.”

Lorina 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. She’s currently writing a second book, a continuation of the first, which will consist of her journey towards healing and advocating for legislative changes. “This is such a huge thing to raise awareness about, because it’s happening a lot more often than people are aware of,” she said. “There are other families that have children with the same medical condition, and they’re going through similar situations, according to the National Hydrocephalus Association.”


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