Child abuse? Think again.
Ehler-Danlos syndrome, or EDS, can cause weak bones in infants and leave them vulnerable to fractures, even with normal handling, says Dr. Golder Wilson, a Dallas geneticist who's scheduled to testify at a court hearing on behalf of the mother, Sabrina Vera.
Vera is charged with felony injury to a child and her son, Jaiden, was removed by Child Protective Services.
Vera, 26, and her partner, Jaiden's father, Ricardo Victorino, 30, were bewildered about their son's injuries until they learned about the disease.
Wilson diagnosed Jaiden with EDS after examining him last month, finding telltale symptoms--eye discoloration, hyper-flexibility and unusually stretchy skin.
There are at least two other families in Texas who have gone through ordeals strikingly similar to what the La Pryor couple are experiencing --mysterious bone fractures in their babies, allegations of child abuse followed by criminal charges of injury to a child.
In both cases, the charges later were dropped after the children were diagnosed with EDS by Wilson. Both families appeared on Katie Couric's talk show in 2013 to tell their stories and spread the word about EDS.
Vera hopes the charges will be dropped in her case as well, and she can bring her son home.
In June, when Jaiden was 2 months old, Vera and Victorino noticed one of his legs looked swollen and floppy.
The baby had cried a lot ever since they brought him home from the hospital, where he'd spent a month in intensive care for aspirating meconium, an infant's first stool, during delivery. But this was different.
"Every time we'd touch his knee, he'd cry out," Victorino said.
So the couple rushed him to a hospital in Uvalde. There, an X-ray showed Jaiden had a fractured thigh bone.
The baby was taken to University Hospital in San Antonio. Scans done there and at the Center for Miracles revealed bone fractures all over his body.
CPS was called in, and the verdict was swift: Jaiden was a victim of child abuse.
"It's been a living, breathing nightmare every since," Vera said.
Child Protective Services declined to comment on the case, spokeswoman Mary Walker said Tuesday.
Vera and her mother were recently diagnosed with moderate forms of EDS by Wilson. Vera had no idea her own hyper-flexibility--to demonstrate, she can pull her thumb down until it touches her forearm--put her son at risk for fractures.
Ironically, Vera was employed for 2 1/2 years by CPS as a caseworker in the foster care system before her arrest.
The problem, said Wilson, is that many in the legal, medical and child welfare communities don't know about the disease and how it can masquerade as child abuse.
At least seven families in the U.S. have become ensnared in the legal system because their children have EDS, he said.
"There are some real injustices happening because of gaps in medical knowledge," he said.
Dennis Moreno, Vera's attorney, said CPS is fighting the EDS diagnosis.
Vera said that when the X-rays came back showing the fractures in her son's body, the idea he'd been abused was a foregone conclusion on the part of hospital personnel and CPS.
"Everyone looked at us like we were monsters," she said, sitting in her modest but immaculate home in La Pryor, where pictures of Jaiden decorate a living room wall and the cheery nursery, decorated with drawings of giraffes.
When CPS first removed Jaiden, he was placed with Vera's mother, and the couple only could see him with supervision three days a week. After a court hearing, Vera was arrested and put in jail for six days, with a $50,000 bond. After she was released, she could only see Jaiden for one hour a week at CPS headquarters in San Antonio.
Vera's mother came across the online video of the Katie Couric show, as well as a Dallas TV station report on EDS.
"We thought, maybe this is the answer," Vera said.
They were able to have then 5-month old Jaiden examined by Wilson in his Dallas office, who used something called the Beighton scale to diagnose the baby.
The blood test for EDA examines all 23,000 genes implicated in the connective tissue disorder spectrum, Wilson said. Jaiden's test won't be available for five months, but even a negative response won't discount the fact he has EDS.
"There are still genes the sequencing doesn't cover, so you could miss the mutation," he said. "You have to look at a group of genes.... That's the fallacy that the courts or CPS are falling into, aided and abetted by geneticists, saying, 'Well, if it's not medical, it must be abuse.'"
He said that spiral fractures--such as the one in Jaiden's femur--are traditionally seen as a sign of abuse, because they involve a twisting, not a simple break.
"But that fact is these bones are really soft in these babies," Wilson said. "You can cause that twist just by the way you grab the ankles and lift to change a diaper."
That Jaiden hasn't experienced any more fractures since being removed from his home doesn't prove Vera's guilt, Wilson added. A number of things could account for that--more careful handling in light of his disease, or increased muscle resistance that develops simply because he's growing.
Many adults and babies with EDS also have vitamin D deficiency, he said; as Jaiden eats and drinks milk, his muscles will grow stronger.
Other than her one-hour visit with her son once a week, Vera only gets to see the pictures her mother texts her.
"I miss him, every single day," she said, standing next to his empty crib, tears in her eyes. "We're speaking out now just so this doesn't happen to another family."
WORDS BY MELISSA FLETCHER STOELTJE/MCT
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|Title Annotation:||HERS: AltHEALTH|
|Author:||Stoeltje, Melissa Fletcher|
|Date:||Dec 1, 2015|
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