While Ashley Bonnes, of Grayslake, was on vacation at 30 weeks of pregnancy, she experienced her first sign of trouble — itching without a rash.
Unaware at the time, Bonnes would later discover she had intrahepatic cholestasis of pregnancy (ICP), a complication that impacted both her pregnancies and raised the risk of her babies being born early, among other issues.
ICP is caused by the buildup of bile in the liver during pregnancy related to higher levels of estrogen and progesterone. These hormones impact how the liver moves bile. As the bile builds up, it dumps into the bloodstream, which causes the itching.
Two healthy babies later, Bonnes credits the Endeavor Health Highland Park Hospital staff and her obstetrician-gynecologists from Endeavor Health Medical Group in Highland Park, who were by her side through it all.
“It is important that caretakers actively screen for ICP throughout the pregnancy,” said Ryan S. Kooperman, DO. “While there are no clear risk factors for ICP, except a previous history, there can be associations with family history, medications and other medical problems. A detailed patient history is essential to early diagnosis. In addition, the healthcare providers should be actively monitoring for symptoms.”
Discovering ICP
The initial itching Bonnes experienced while on vacation returned at 33 weeks, so she sent a MyChart message to her doctors. “The most common first symptom of ICP is pruritus, or itching,” said Dr. Kooperman. Itching commonly occurs on the palms of the hand and soles of the feet, but it can also be generalized itching as well. Symptoms may range from severe to mild.
Theresa Hughes, MD, called her almost immediately, asking Bonnes to get lab work done for diagnostic testing. The ICP blood test is considered positive when total bile acids are at least 10 mcmol/L or greater. Bonnes’ value was 107.
“I cannot say enough about how comfortable I was with the physicians at Endeavor Health Medicine Group,” Bonnes said. “I value them so much because they knew action needed to be taken when I reached out about symptoms, and they knew to do testing for ICP. I appreciated it then, but I didn’t know how lucky I was at the time for how the doctors handled it.”
Bonnes arrived at the hospital a few days later with her next complication — cramps. There, she met Dori Becker, MD, Dr. Becker confirmed these were actually contractions and Bonnes was in premature labor. Bonnes was given steroids and surfactant as a precaution to protect the baby’s lungs if a premature delivery happened. Fortunately, the contractions stopped, and Bonnes was sent home the next day on bedrest.
A wedding … then a baby
There was just one issue with that bedrest order — Bonnes and her fiancé, Bill, were supposed to get married three days later. The wedding was allowed to continue if Bonnes promised to stay seated. Bonnes says the only exceptions given were to walk down the aisle, stand to go to the bathroom and dance the shortest first dance for one minute with her husband.
Nine days after the wedding, Bonnes woke up with an intense, constant sharp pain, as well as mild bleeding. She called to explain her condition and was told to come to Highland Park Hospital immediately. She jokes that she slept through all the contractions and what was apparently labor, because, once at the hospital, Bonnes was told she was completely dilated and ready to deliver at 35 weeks and 3 days.
Bonnes described the delivery as fast and furious; there was no time for pain medication, even with shoulder dystocia when her son’s shoulders were stuck in the delivery process, requiring an episiotomy.
Bonnes explained that after delivery, “I told a nurse that I felt dripping. The nurse examined me right away and weighed a bloody pad that was underneath me. The pad was heavy and more blood-soaked than typical. The team jumped into action and saved my life.”
Leslie Oshin, MD, discovered Bonnes had a partially retained placenta and needed an immediate dilation and curettage (D&C) surgery to stop the bleeding.
Her son, Wyatt, spent eight hours in the nursery for observation while Bonnes was in surgery and recovery. They were reunited after that timeframe and ready to begin the next phase of life together.
A second time around
For Bonnes’ second pregnancy in 2022, Dr. Kooperman felt confident he could manage her care with the agreement that her care would transfer to the maternal fetal medicine specialists at Endeavor Health Evanston Hospital if needed.
During this pregnancy, Bonnes did not have a positive ICP diagnosis until 36 weeks, with earlier testing being negative. At 37 weeks and 3 days, Bonnes was induced for delivery for her daughter, Ella.
“Emotionally, I felt anxious during my whole pregnancy with Ella.” Bonnes admitted. “I was actually pretty healthy and was doing well until COVID right before the ICP diagnosis. However, I just couldn't feel too excited until she was here. Because with Wyatt, everything seemed okay until it wasn't, so even having a healthy pregnancy the second time wasn't enough to ease my mind. I wouldn't tell anyone her name until she arrived — I was just too nervous. Dr. Kooperman helped and gave me reassurance and confidence.”
Advocating for awareness
Bonnes, Wyatt and Ella are all healthy today with no residual symptoms. One way for Bonnes to process the experience and participate in patient advocacy was through ICP Care. Bonnes now is the lead ambassador for the organization, which helps to connect, support, educate and empower those affected by ICP.
“I have worked for a breast pump company focusing on the NICU (Neonatal Intensive Care Unit) and had volunteered with March of Dimes, and I'd never heard of ICP. I had no idea that itching could be a fatal symptom in pregnancy, and I fear that it goes underdiagnosed,” she said.
Bonnes also discovered through genetic testing that she has an alpha-1 antitrypsin (AAT) variant, which is associated with lung and liver diseases, as well as ICP. “This could be an indicator to be more vigilant for pregnant people,” Bonnes said.
Complications of ICP include gestational diabetes, maternal hemorrhage, premature birth, fetal distress and stillbirth.
“After dealing with a life-threatening gestational disease and having no warning of it the first time, I knew that I needed to do something to help spread awareness,” she added. “If I can help save anyone from losing their baby, it's a worthwhile effort.”
Bonnes and Dr. Kooperman have teamed up to offer a Webinar about ICP, available at icpcare.org.
Itching without a rash is one of several ICP symptoms, along with: dark urine, jaundice or yellowing of the skin and whites of the eyes, light- or pale-colored stool, nausea, exhaustion, decreased appetite and upper abdominal pain. “Patients presenting with these symptoms should be immediately sent for labs to confirm the diagnosis,” said Dr. Kooperman.
If the diagnosis is confirmed, depending on lab results and symptoms, induction of labor can be considered as early as 36 weeks’ gestation. “Timing of induction should be a collaborative discussion between the patient and care team based on symptoms and clinical labs value in order to come to a decision that is best for everyone,” he added.
“ICP is a serious and potentially life-threatening process, so even the slightest hint of symptoms should be taken seriously. It is important that patients advocate for themselves when feeling any symptoms that may be similar to those that may be consistent with ICP. In addition, physicians should be actively screening patients for symptoms throughout the pregnancy so there is no delay in diagnosis,” said Dr. Kooperman.
