MIAMI (CBSMiami) – Just days away from holding her first child in her arms, Donna Benavides experienced the unimaginable.
"I was in a complete state of shock," said Benavides.
Benavides baby boy, whom she had already named Jorden, died in the womb after she had contracted a rare pregnancy disorder.
At 33 weeks pregnant, Benavides first noticed an itch on the palms of her hands and on the soles of her feet. Eventually it spread all over—even to her scalp.
She said her doctor prescribed hydrocortisone cream but it didn't work.
"It was something you couldn't relieve," said Benavides. "It was very intense and you just want to scratch and scratch."
Still searching for answers, Benavides took a blood test that revealed she had ICP, Intrahepatic cholestasis of pregnancy.
Benavides came to find out that the disease attacks the liver and often causes the itch.
Benavides says for her baby's safety, her doctor planned to induce pregnancy at 38 weeks. But two days before that delivery date, the expectant mother noticed baby Jorden had stopped his usual kicking.
"That's when the real feeling of dread set-in because I think I already knew that he was…that something horrible had happened to him," said Benavides.
Rushing to her doctor, an ultrasound confirmed Benavides biggest fear.
"They check for his heartbeat and he was gone," said Benavides.
From her own heartbreaking loss, Benavides is now making it her mission to bring awareness about ICP to other women.
She started the non-profit ICP care in Miami and partnered with a doctor in New York who researches the disease.
"Currently our only defense against the disorder is number one diagnosing it in a timely fashion," the doctor said. "We like to move as quickly as possible with these patients and get them delivered."
Dr. Jonathan Mays says as soon as the baby's lungs are formed, inducing delivery is key.
The disorder, according to Dr. Mays, can be genetic, linked to diet, hormone issues, or other chronic liver conditions. His research shows it is more prevalent in spring and winter months and with multiple births.
While the disorder is rare, Dr. Mays says it is more common in Latin women.
Benavides contracted the condition again with her next pregnancy but this time, with quick diagnosis and care, she is now a happy mother—and a busy one.
Benavides just finished a month long campaign on ICP awareness with events held in 10 cities across the country—she is determined to share her story to possible help other expectant mothers.
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