Dr. Carolyn Spiro-Levitt was 20 weeks pregnant when she was diagnosed with an incompetent cervix.
Like most women, the 31-year-old clinical psychologist in New York City, had never heard the term before.
“My first thought was, ‘What a cruel and insulting name,” Spiro-Levitt told TODAY Parents.
An incompetent cervix, also called a cervical insufficiency, is when the cervix opens in the second trimester as the baby grows. According to Dr. Ashley Roman, director of Maternal Fetal Medicine at NYU Langone Health, the condition is believed to be caused by weak cervical tissue.
“The problem with incompetent cervix is that many women have no symptoms or they have symptoms that overlap normal symptoms associated with pregnancy such as an increase in vaginal discharge or pelvic pressure,” Roman told TODAY Parents. “The reason why it is often diagnosed too late is because cervical dilation is painless.”
Spiro-Levitt knew something was terribly wrong when her chatty ultrasound tech suddenly went silent during her baby’s 20-week anatomy scan in June.
“My heart sank,” she recalled.
Spiro-Levitt, who wasn’t due until November, soon learned she was three centimeters dilated, and nearly 100% effaced. But how could that be? Spiro-Levitt felt totally fine.
With her husband, Josh Levitt, by her side, doctors laid out three scenarios.
“We could terminate the pregnancy, we could do nothing, which wasn’t really an option because I would go into labor, or I could have a procedure called an emergency cerclage,” Spiro-Levitt explained.
The couple chose the third option, which is essentially at stitch in the cervix used to prevent a premature birth.
“It was very risky. I was told that it could give me a significant amount of time or that I could go into labor the next day,” Spiro-Levitt recalled. "I put myself on bedrest. I was afraid to sneeze. I was afraid to go to the bathroom. Every time I moved, I felt guilty.
The emergency cerclage bought Spiro-Levitt an additional three weeks.
On July 5, she delivered a baby boy named Eli, knowing he wouldn't survive.
“Our son came out sucking his thumb. He was born alive. But by the time they handed him to me, he had passed,” she told TODAY Parents. “He was incredibly beautiful with a little button nose. But it was also so devastating because we could see that he really looked like Josh.”
Now, nearly two months after losing her child, the grieving mom is speaking out in hopes of raising awareness about IC.
“IC affects one in 100 pregnancies and yet it was something I was never told about,” she said. “I’m angry.”
Earlier this month Spiro-Levitt wrote an op-ed for the The Washington Post urging women to advocate for ultrasounds or internal checks of the cervix betweens weeks 16 and 18 of pregnancy.
“Most of the time, IC is picked up at the 20-week anatomy scan, but for many women and their babies, it is already too late to save them,” Spiro-Levitt wrote. “Emergency cerclages placed earlier have much better outcomes and offer chances for a successful pregnancy.”
Spiro-Levitt also wants women to trust their gut if something feels off. She experienced pelvic pain and pressure before her diagnosis.
“I messaged my doctor and she wrote that I should monitor for cramping and bleeding. Since I wasn’t having either of those things, I thought I was OK. I stopped worrying,” Spiro-Levitt said. “I wish I had known there was a possibility my cervix was dilating. If only I’d asked more questions. The 'what ifs' are painful."
