Ashley Sicher had an invisible itch. It had begun in early spring 2017, in the third trimester of her first pregnancy. During the day, the itch was noticeable, but concentrated on her palms and feet. At night, the itch became unbearable, spreading up her arms and torso. She furiously scratched at the subterranean itch with the bristles of a hairbrush, until she broke the skin.
Sicher had no rash, and her obstetrician at the time assured her that itching was a normal symptom of pregnancy. Yet this didn't feel like a normal itch. It was a penetrating, psychologically infuriating itch.
"It's like you're being burned under your skin," Sicher said, "with bee stings on top."
Early one morning, 34 weeks pregnant and at a breaking point from scratching all night, she Googled her symptoms. What she found changed everything. She woke her husband, in tears.
"The baby's going to die," she said.
What Sicher had found was a blog called "Pregnant Chicken." Under an archive about "scary" stuff, an article warned readers about a pregnancy-related disease that was characterized by itchy hands and feet. But what caught Sicher's eye and incited panic was the part that said "can be devastating for the baby," listing outcomes of fetal distress, preterm labor - and stillbirth.
Sicher was experiencing symptoms of intrahepatic cholestasis of pregnancy (ICP), a disorder that affects the liver of a pregnant woman, stopping it from properly processing bile, which is needed for digestion. In addition to unbearable itching, ICP can cause a toxic environment in the womb that can be dangerous to the growing baby.
The cause of ICP is unknown, although there may be a genetic component in some cases. The condition occurs in about 1 percent of pregnancies, according to the Genetic and Rare Diseases Information Center of the National Institutes of Health. The risk appears to be higher among Latinas and women of Scandinavian descent. For women who have experienced ICP in one pregnancy, the risk of having it again in subsequent pregnancies is 50 to 60 percent, according to the Society for Maternal Fetal Medicine.
Because the symptoms of the condition are unremarkable - itching - many patients do not get tested or treated, which usually includes carefully monitoring the baby, use of a drug that can reduce the flow of harmful bile acids across the placenta, and early delivery.
As a result, about 15 of every 1,000 untreated ICP pregnancies end in stillbirth, said Jonathan Mays, director of obstetrics and maternal fetal-medicine at New York Metropolitan Hospital Center and an associate professor at New York Medical College. He has compiled the largest database in the country of about 500 patients with ICP.
These stillbirth numbers are "higher than anything we see in OB," Mays said.
"There's a real deficit in education" about ICP, said Jordan Perlow, clinical professor of obstetrics and gynecology at the University of Arizona College of Medicine's Division of Maternal-Fetal Medicine.
"ICP just doesn't seem to be on the radar," Perlow said. 'This is something you just don't see spoken about at medical conferences."
As a result, "there is no (clear) standard of care for ICP," said Donna Benavides, founder of ICP Care, a nonprofit organization that provides patient resources and raises funding for research on the disease. Benavides started the group after losing her first child to the disease 16 years ago, two days before her scheduled labor induction.
Christian Pettker, chief of obstetrics at Yale New Haven Hospital, said ICP is not routinely screened for at medical facilities. But, "the general consensus is that if someone has itching without a rash in the second or third trimesters that is not explainable by any other issues, (their) bile acids should be sent" for laboratory analysis.
ICP is diagnosed through two blood tests - a liver function test, which is quick but less diagnostic in this case, and bile acid level test, which is more definitive but can take 10 days to produce results, during which time the risk to the baby can increase.
The night Sicher learned she was having symptoms of ICP, she called her obstetrician, and they met at the hospital, where she showed him the frightening article she had found on the internet. Sicher said he didn't seem familiar with ICP, but admitted her for fetal monitoring.
The baby continued to be monitored for movement and heart rate until Sicher's bile acid test confirmed that she did have ICP. She was then sent home with a prescription of ursodeoxycholic acid to improve the flow of bile acids and decrease itching. Doctors also said they would induce her baby at 37 weeks, since after that point the possibility of stillbirth increased dramatically for women with ICP, probably because of the normal deterioration of the placenta, which acts as a filter for harmful toxins. Some doctors even push to induce at 36 weeks in ICP cases, although this can increase the risk of prematurity issues.
Four days after Sicher left the hospital, though, at 36 weeks, the baby failed a nonstress test that measures the response of the fetal heart rate to movement. Her obstetrician had her eat candy and drink cold water, which often cause a baby to kick and move around.
"They kept coming in, looking at the monitor and going back out," Sicher said. "She just wasn't moving."
Sicher was immediately induced. The baby, Adaline Sicher, was admitted to a neonatal intensive care unit for jaundice, but otherwise had no complications. After about a week, Sicher and the baby went home.
Sicher's itching subsided shortly after her delivery.
Benavides said she is hoping to increase awareness of ICP so that more mothers like Sicher go home with healthy babies.
ICP, she said, falls through the cracks because a diagnosis relies on one often elusive symptom: itchiness. And many doctors get desensitized to pregnant women worried about one seemingly minor symptom or another, she pointed out.
The organization is trying to get obstetricians to routinely screen for itching, Benavides said. With active management of ICP and early delivery, she said, the risk of stillbirth goes down to the same as a healthy pregnancy, about 1 percent.