When Children Are Ripped From Parents Because of Misdiagnosis Everyone Loses

“How would you feel if this type of situation were to happen to you?” Lorina Troy said to members of the Texas House of Representatives committee that oversees the state’s child welfare system. The situation being temporarily losing custody of her children due to a medical misdiagnosis. She was there to testify about the ordeal her family went through.

In 2015, Lorina and Jason Troy had their second son, JJ, shortly after moving from California to Texas. When he was born, doctors did not indicate that anything was wrong with JJ. However, soon after taking him home, JJ started vomiting. Lorina also noticed that his head was growing larger than it seemed like it should. She took JJ to their pediatrician, but JJ was merely diagnosed with a stomach flu. But the vomiting didn’t stop.

The Troys took their infant to urgent care centers and eventually a children’s hospital. Finally, doctors did an MRI on JJ and discovered a fluid build up in his brain. While this can be caused by several medical conditions, it can also be caused by Shaken Baby Syndrome and the doctors immediately decided that JJ was the victim of child abuse. 

Child Protective Services (CPS) took both the Troy children from their parents and put them in foster care. Jason was charged with felony child abuse and as a result lost his job. The Troys sold their house to pay for legal and medical fees in their efforts to find out what was really wrong with JJ and to prove Jason’s innocent. While Lorina regained custody of her children after five months, it took two and a half years to find a diagnosis for JJ and get the charges against Jason dropped. It turned out that JJ had Benign External Hydrocephalus, a condition where cerebral spinal fluid builds up in the brain.

Rep. James Frank, the committee chairman, said an NBC News and the Houston Chronicle investigation exposed serious problems and that the hearing was the first step in coming up with solutions. “We’re here to learn from past mistakes,” Frank said at the start of the hearing, which also featured testimony from child welfare officials, prosecutors and doctors.

Committee members peppered officials with broad questions about the enormous weight given to the opinions of child abuse doctors, and how to weigh child safety against the possibility of an unnecessary removal. The elected officials zeroed in with more targeted questions about the appropriateness of the current legal standards for taking children, the agency’s wildly varying removal rates across the state, and concerns about whether child abuse specialists can accurately evaluate children they didn’t personally examine.

Dr. James Lukefahr, a child abuse pediatrician based in San Antonio, testified on behalf of the Texas chapter of the American Academy of Pediatrics. Lukefahr defended the work of child abuse pediatricians, a new and growing medical subspecialty of doctors who work closely with child welfare agencies to identify signs of abuse and protect children from additional harm. Lukefahr said child abuse pediatricians are also trained to find underlying conditions that can mimic abuse, so they can prevent needless removals. 

But, he said, nobody is perfect. “Working in this field I’ve seen terrible things, babies with a dozen broken bones, children maliciously burned, teenagers beaten to the edge of their lives,” Lukefahr said. “I’ve also seen mistakes, processes not followed, errors in judgment, and decisions that were based more on emotion than science.”

Frank said he intended to call additional hearings in order to develop ways to improve the system and protect parents. Some legislators have suggested creating a way for courts, child welfare workers or accused families to request a second medical opinion before the state removes a child from a home. “The vast majority of the time, we’re talking about trying to make sure we prevent every child death,” Frank said. “We understand the tremendous impact of missing it on the other side, but it is a careful balance that we need to have.”

The Troys weren’t the only parents testifying that day. There were other Texas families that had gone through similar situations. In fact, the investigation by NBC News and the Houston Chronicle received hundreds of reports of misdiagnosed child abuse from families all over the country. Since the hearing, 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. 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.