Category Archives: Child abuse misdiagnosis

A Personal & Potent Fight for Justice

When doctors at the Arkansas Children’s Hospital diagnosed 3-month-old Quincy as a victim of child abuse, the press ran with the story. Medical imaging had revealed 17 fractures to the boy’s tiny bones, and police were targeting his father, Zachary Culp, who worked in the school cafeteria. The community understood that an accused child abuser had been in regular contact with its children.

The day of his arrest, while Zachary waited for processing with other prisoners in the holding tank, a breaking-news bulletin interrupted normal programming on the wall-mounted television to announce the development. His face loomed on the screen.

The first assault came just a few hours later, and the guards were in no hurry to stop the violence. “They beat the crap out of me,” Zachary recalls. “I didn’t think I was going to live the next 72 hours.”

He credits his survival to his uncle, a police detective who’d offered him a set of jailhouse tips before his arrest. When assaulted, Zachary says, he was told to “assume the fetal position, like you’re getting ready for a hurricane.” Zachary lost 48 pounds during the 73 days he spent in jail, he reports, but he did survive.

A year later, he was back with his wife Sarah and their son Quincy, after a series of legal and medical developments including Sarah’s diagnosis with Ehlers-Danlos Syndrome (EDS), a genetic condition that would explain the fractures in her son.

“That was all Sarah,” Zachary says. “She has phenomenal research skills.”

Sarah had started by searching on traits they’d noticed about Quincy since birth: easy bruising, blue sclera, lots of spitting up, with slow weight gain—the last diagnosed in Quincy as “failure to thrive.” She found the story of Rebecca Wanosik, a wrongly accused parent who helped form Fractured Families, a support group for families accused of abuse based on a medical misdiagnosis. She learned about EDS and Dr. Michael Hollick in Boston.

Zachary was out on bail by then, but because of a “no-contact” order against him, Sarah took Quincy by herself to Boston for their first consultation.

“Dr. Holick saved our son’s life,” Zachary maintains. At that point, Quincy was so small he had “fallen off the growth charts,” he explains. “He was barely making it. We were desperate for help.”

EDS can’t be confirmed in an infant, but Dr. Holick diagnosed Sarah with EDS and found early signs in Quincy. He also gave Sarah the first useful advice she’d gotten about Quincy’s diet, and her baby started gaining weight. Now 5 years old, Quincy has been diagnosed definitively with Stickler’s Syndrome, another auto-immune condition.

Immediately after his family’s legal ordeal, Zachary Culp became an activist in the arena. A seriously effective activist.

In 2021, only three years after his arrest, Zachary had ushered “Quincy’s Law” through both his state senate and the house: Families accused of abuse in Arkansas based on a medical diagnosis now have the right to a second opinion—like the opinion that finally got Quincy’s health on track.

Zachary based Quincy’s Law (now Act Number 976) on legislation crafted and tweaked by family activists in Texas. He offers advice and a template to families interested in pushing for similar laws in their own states.

Zachary says his political strategy was to approach elected officials personally, “one relationship at a time.” He started with the legislators closest to him, in Pulaski County. He tried to find common ground, ways that he could support their own efforts, with letters or phone calls or outreach. “I like to see what they want to talk about first, before I push my own agenda,” he explains.

He worked his way out in wider geographical circles and up the hierarchy, routinely driving to the state capitol in Little Rock on his days off. He networked with other Arkansas families who had experienced a medical misdiagnosis of abuse.

Zachary recognizes Child Abuse Awareness Month most years—not this year, because a tornado had just ploughed through his part of Arkansas—by taking out an ad in the local newspaper, looking for other accused families.

He and Sarah offer advice and support to the newly accused, who find him through the ads or on Facebook. He’s keeping track of disputed diagnoses by Dr. Karen Farst, the child abuse pediatrician who diagnosed abuse in Quincy’s case.

Last year, he made his first shot at his own seat in the legislature. He lost, but that’s the norm for a first-time candidate. He’s not giving up.

These days, Zachary’s social media feed offers dispatches from EDS and innocence activists, in between celebrations of his family and his church community.

Whatever he does next, Zachary Culp has already proven that one person can make a difference.


copyright 2023 Sue Luttner

If you are not familiar with the debate surrounding shaken baby syndrome, please see the home page of this blog.


Filed under Child abuse misdiagnosis

Bone Fragility: A New Cause

Researchers have identified a new underlying cause of fragile bones in developing fetuses, this one apparently associated with maternal Ehlers-Danlos Syndrome (EDS), according to a news release propagated by the American Association for the Advancement of Science.

The paper behind the press release underscores the pitfalls of diagnosing abuse by default when a child with fractures in different stages of healing tests negative for known genetic conditions that predispose to fragile bones.

The original article ran in the journal Children: Fetal Fractures in an Infant with Maternal Ehlers-Danlos Syndrome, CCDC134 Pathogenic Mutation and a Negative Genetic Test for Osteogenesis Imperfecta, by Michael F. Holick, Arash Shirvani, and Nipith Charoenngam

The article is a case report from the Ehlers-Danlos Clinical Research Program at the Boston University Medical Campus, where researchers examined ultrasounds of the developing fetus at several points during gestation and identified what looked like fractures suffered in utero. X-rays after birth confirmed the findings. The boy tested negative for osteogenesis imperfecta (OI) and other known causes of fragile bones, including vitamin D deficiency. The authors note:

If this mother had brought in her son for medical care later in his infancy without prior diagnosis of in utero fractures, these X-ray findings would almost certainly have resulted in the diagnosis of nonaccidental trauma.

Citing other abuse diagnoses based on fractures in children of EDS parents, the authors point to an “urgent need for further investigations to identify additional causative genetic variants for skeletal fragility, including yet to be identified genes associated with a well-recognized bone fragility disorder associated with a genetic defect of the collagen–elastin matrix: EDS.”

Leave a comment

Filed under Child abuse misdiagnosis, diagnosing child abuse