Our Story — Kathleen and Thomas from Plymouth
Hutzel Doctors Understand the Risks of Intrahepatic Cholestasis of Pregnancy (ICP)
It started with an itch — nothing too bad, just an itchy spot on her ankle. But soon her hands and her feet started to itch. Before long, it spread to her entire body.
Seven months pregnant with her second child, Kathleen Frey and her husband, Thomas, were concerned. There was no visible rash, no apparent reason for the now maddening itch. But, deep down, they knew something was wrong.
A resident of Plymouth, Mich., Kathleen was a regular patient at a large obstetrics and gynecology practice in the area. At first her doctor recommended skin lotion, saying dry skin was common in pregnancy. But when Kathleen said she thought it was more than dry skin, the doctor ordered a blood test to check for a rare liver disorder which can develop during pregnancy and cause, among other things, itching.
The blood test confirmed Kathleen’s suspicion; it was more than dry skin. Kathleen had Intrahepatic Cholestasis of Pregnancy (ICP), a condition caused by an impairment of bile secretion in the liver. As the bile backs up in the liver, the level of bile acids increases in the bloodstream — causing intense itching.
With ICP confirmed by the blood test, the doctor wrote a prescription and told Kathleen to stop worrying about it. Just go home and wait for the itching to subside.
But once home, Kathleen spent a few minutes on a popular Internet search engine to research the condition. She was shocked by what she discovered.
According to her research — including studies published in several respected medical journals — the itching was the least of her worries. Recent studies had shown a link between ICP and serious pregnancy complications, including still birth at full term. According to one study, women with ICP had a substantially higher rate of still birth than women who never developed the condition.
The studies also suggested the medication Kathleen’s doctor had prescribed was no longer the preferred treatment for ICP. Studies had shown a newer drug, Actigall, to be more effective in controlling the condition. In addition to using this new drug, researchers also recommended that women with ICP should be induced to deliver at 36- to 38-weeks gestation to avoid the elevated risk of still birth after 38 weeks.
But when Kathleen shared this information with her physician, the doctor didn’t want to hear it.
“She didn’t want to listen to me, didn’t want to see the studies I’d printed out to show her,” Kathleen said. “I think she was just comfortable with the way she’d always practiced medicine and didn’t want to learn anything new, regardless of what the research said was the best treatment.”
That’s when Kathleen and her husband decided to get a second opinion from the high-risk pregnancy experts at Hutzel Women’s Hospital. In less than a week, they had an appointment with a nationally known researcher and Maternal-Fetal Medicine specialist at Hutzel Women’s Hospital.
The Freys were immediately at ease with the Hutzel staff. “From our very first appointment, it was clear they were taking our situation very seriously,” Kathleen said. “I felt like they were willing to listen to me and hear my concerns. And I didn’t need to show them any of the studies I’d printed out.”
As researchers themselves, the Hutzel team was already familiar with the studies which linked ICP to a higher risk of full-term still birth.
They recommended weekly monitoring of the fetus and additional tests, including ultrasounds and amniocentesis. And, when the baby was ready, they recommended early delivery to avoid possible complications at full term.
The specialists at Hutzel offered to call Kathleen’s regular obstetrician to explain their recommendations, but the Freys now wanted to deliver the baby at Hutzel Women’s Hospital.
“The Maternal-Fetal Medicine team at Hutzel was so knowledgeable and so comforting, it didn’t make sense for them to try to explain things to another doctor,” Kathleen said. “I just wanted them to deliver the baby.”
So Kathleen transferred her medical records to a specialist at Hutzel and began weekly appointments with the Maternal-Fetal Medicine team. As soon as an amniocentesis showed the baby’s lungs were fully developed, they scheduled a C-section.
On February 16, 2008 — almost a month before her due date — Kathleen had a 7-pound boy. Today, Nathan Thomas Frey is a healthy and happy preschooler. Like many boys his age, he’s fascinated with toy trains.
“I’ve read about women who lost their babies because of ICP. So I feel very blessed to have learned about this and found a medical team who takes it seriously,” Kathleen said. “Nathan is such a good little boy — and healthy! We’ll always be thankful to Hutzel for that.”