In May 2015, Lorina Troy experienced one of the most devastating events a mother can go through: her children were removed from their home and placed in foster care. Lorina had two sons, one was four years old at the time, and the other was just five months old. The five-month-old, JJ, had been having issues with vomiting a lot, and had a somewhat enlarged head. This eventually led to a misdiagnosis of child abuse and CPS removing the children. It took 5 months to regain custody of her sons and two and a half years to get JJ the correct medical diagnosis of Benign External Hydrocephalus, a condition where cerebrospinal fluid builds up in the cranium.
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 year-long 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. These stories came from all over the United States demonstrating the nationwide nature of this issue.
The news reports focused on child abuse pediatricians. Child abuse pediatricians are a small but growing subspecialty of physicians who work closely with state child welfare agencies. They provide, “expert reports and court testimony in thousands of cases a year, shielding untold numbers of abused children from additional harm.” However, the investigation found that when the evidence is less clear, a mistaken or overstated diagnosis of child abuse can be made.
Child abuse pediatricians must determine whether an injury is the result of trauma or was accidental or natural. But once a child abuse expert makes a determination of abuse, it becomes very difficult to change the tenor of the conversation. There is no requirement for getting a second opinion. And often, other doctors in the community are reluctant to contradict colleagues. In some cases, parents did get second opinions that disagreed with the diagnosis of abuse, but these were ignored by Child Protective Services (CPS).
This has resulted in families going through the horror at being accused of abuse and the agony of weeks or months apart from their children. Many parents have trouble finding lawyers or medical experts to review their cases and often must take out tens or hundreds of thousands of dollars in loans for legal fees. Lorina’s family ended up losing $80,000 in lost wages, legal fees, and medical costs. They also suffered emotionally and even missed time with their children they could never get back.
Due to the reporting done by NBC and the Houston Chronicle, Texas lawmakers launched a series of hearings, and some have proposed enabling courts or parents to seek a second medical opinion after a doctor reports abuse. Other lawmakers have suggested changing the way Child Protective Services approaches investigations when the only evidence of abuse comes in the form of a doctor’s note. Texas lawmakers said they plan to take up these proposals in the state’s next legislative session in 2021.
Since her family’s experience, Lorina has become an advocate for families like hers that have experienced the devastating results from a child’s misdiagnosis. She has lobbied lawmakers in Texas and California to change laws on getting second medical opinions and the role of CPS in cases like these. She also talks to the press to raise awareness of Hydrocephalus and stories of misdiagnosis like hers and many other families across the country. Lorina says, “Our strength came from our faith, our prayer, and the love and support of family and friends. But we went through the most challenging events of our lives, and it has strengthened us.”
Lorina wants to make physicians, hospitals, judges, law enforcement and CPS aware that children can be misdiagnosed with child abuse when the child has a medical condition. She 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.
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. It is available directly through the publishing company, Westbow Press, A Division of Thomas Nelson & Zondervan. 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.