Testifying To Save Your Child After A Trusted Team Of Doctors Misdiagnose Him

“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.

Two decades ago, when Dr. Michael Laposata was the director of clinical laboratories at Massachusetts General Hospital and a Harvard Medical School professor, he noticed a disturbing pattern. The state was taking children from their parents based on mistakes by doctors. Children with bruises or internal bleeding were being misidentified as victims of abuse after doctors missed underlying medical conditions that can cause those same injuries.

In the years since then, Laposata says he’s reviewed hundreds of cases on behalf of accused parents and helped overturn several convictions. Now the chief of pathology at the University of Texas Medical Branch in Galveston, he is part of a growing group of physicians who, along with lawmakers, are advocating for stronger safeguards to prevent child abuse misdiagnoses following a yearlong investigation by NBC News and the Houston Chronicle.

Rep. James Frank, the Texas House of Representatives committee chairman, said the joint 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.

Lorina testified in that hearing about her family’s orderal. Her second son had been born with Benign External Hydrocephalus but was misdiagnosed when only a few months old as being the victim of abuse. Due to this, Lorina’s children were put into foster care and her husband, Jason, was charged with felony child abuse and lost his job. After selling their house and losing $80,000 in legal and medical fees, the family finally got JJ’s correct diagnosis two and a half years later. The legal charges were dropped, but the trauma of the ordeal remains.

But this phenomenon is not limited to Texas. Lorina’s story is just one of the stories shared with NBC News and the Houston Chronicle by more than 300 families from 38 states, following their yearlong investigation. The flood of responses demonstrates the nationwide reach of problems detailed in the series, which showed that child welfare workers in Texas removed children from homes after receiving reports from doctors that were later called into question.

The Troys weren’t the only parents testifying that day. There were other Texas families that had gone through similar situations. 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.