My story is tragic, but not unique. I had a fairly typical pregnancy, with only minor complications, raising our hopes that we were out of the woods for a miscarriage or loss. But like many women, I had an “incompetent cervix.”
On June 15, the date of my 20-week anatomy scan, the world came crumbling out from underneath us. My husband and I were excited and nervous for the scan, the most detailed one yet, that would let us see what our little boy looked like but could also pick up on any issues with his development. Coronavirus regulations required that I go to the appointment alone, with my husband waiting in the car. I sat in the dark office with the silent tech as she took hundreds of images of our baby. I could see a moment of confusion and fear on her face, and I knew there was a problem. She ran out to get the doctor on call, who came in silently with a similar look of horror.
At 20 weeks, I was three centimeters dilated, nearly fully effaced, and it seemed like I was about to go into labor. As if women don’t feel guilty or blamed enough, I was diagnosed in that moment with an incompetent cervix (IC for short), meaning that my cervix had opened prematurely under the weight of the developing baby.
My husband and I were rushed to the hospital, where the doctors laid out three options: We could do nothing and lose the baby likely within a few days; we could terminate the pregnancy; or we could try a procedure called an emergency cerclage to stitch my cervix closed. The doctors insinuated that the procedure was a long shot and would put the pregnancy at risk through possible rupture of the water sac and put me at a high risk of infection.
We decided we were going to fight with everything we had to give our baby boy a chance to live, and we went ahead with the surgery.
It was successful in that the doctor was able to close my cervix without rupturing my water sac, but the doctors were clear that, given how advanced my dilation was, there was no way to predict how long the stitch would hold before I went into labor. It could be one day, or it could be 10 weeks: They could not tell us.
The next few weeks were the longest and hardest weeks of our lives. I was on strict bed rest, afraid to move a muscle. Each sneeze, trip to the bathroom, and movement was filled with absolute terror, knowing that my water could break at any moment. I stayed as still as could be for three weeks straight.
We were forced to have heartbreaking conversations about what would happen if I went into labor at each gestational week — what outcomes would look like at 23 weeks, 24 weeks, 25 weeks. We were told by neonatologists about all of the devastating outcomes that could happen to our baby at each one: brain bleeds, intubation, feeding tubes, possible long-term disabilities. We were crushed, but tried so hard to stay hopeful, believing if I just stayed still enough, we could keep our boy growing safely inside me.
On July 5, I woke up in the middle of the night with contractions. I tried to will them away, but they came every five minutes, more consistent, louder and more painful. My husband and I returned to the hospital, where we were told the news we had been dreading: that I had dilated through the stitch and was in active labor. We would lose our baby.
The next few hours were the most physically and emotionally painful of my life. I went through labor and delivered our beautiful, tiny, perfect baby boy. The moment he was born was both the most amazing and most devastating moment I have ever experienced. I could see immediately that he looked exactly like my husband.
He passed away within about 15 seconds. We held him for hours, studying his little button nose, his sweet lips, his 10 fingers and toes.
As tragically as we lost him, we were surprised to learn that a simple ultrasound or check of the cervix a few weeks earlier could have made all the difference. IC affects about 1 in 100 pregnancies, according to the Cleveland Clinic. IC can lead to both pregnancy loss as well as severe prematurity, leading to excruciatingly long and risky NICU stays. IC typically happens between weeks 16 and 20 of pregnancy, a time when many, if not most, women do not receive any ultrasounds or internal checks of the cervix.
The reason? Arthur Haney, a reproductive endocrinologist and professor of obstetrics and gynecology at the University of Chicago Medicine, who is an expert in the treatment of IC, said it is perceived as a “relatively uncommon problem, with symptoms overlapping with symptoms experienced in normal pregnancy.” And so many doctors don’t presume it to be the issue when a woman complains of symptoms such as pelvic pressure or pain. In addition, he said, “insurance has a standard paradigm of care which does not include screening for IC. These are particularly impactful in the age of covid-19, where justifying doing anything outside of standard guidelines is being questioned.”
For many women, dilation in IC cases happens without any associated symptoms. But around 18 weeks of pregnancy, I began experiencing some. When I messaged my doctor’s office, I was told these were likely typical pregnancy symptoms and to monitor for bleeding or abdominal cramping. I now struggle with guilt after realizing what I was feeling may have been linked to my cervix dilating.
“Unfortunately, the symptoms of an impending IC loss overlap with the discomforts associated with normal pregnancy, so they can be easily overlooked,” explained Haney. However, he said, complaints like mine in the second trimester “deserve evaluation by a simple ultrasound exam given the severity of the possible consequences, loss of a child or permanent disability from an extreme preterm birth.”
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. Emergency cerclages placed earlier have much better outcomes and offer chances for a successful pregnancy. While the cervix can change quickly and it is not always possible to pick up symptoms of IC, it is possible that many babies could be saved if regular ultrasounds or checks of the cervix were done around 16-18 weeks of pregnancy, particularly when symptoms occur.
While many women with IC have no known risk factors, there are some factors that pregnant women should be aware of. According to the Cleveland Clinic, women with cervical trauma (such as from procedures associated with abnormal Pap smears like a LEEP or conization or other cervix surgery); a history of uterine or cervix anomalies; exposure to diethylstilbestrol (DES), a synthetic hormone; and damage to the uterus from previous miscarriage, stillbirth or abortion may be at higher risk for IC.
Women, especially those with any risk factors, should feel comfortable advocating for themselves and asking as many questions as they need to during their pregnancy.
We hope that our painful story can raise awareness about IC and prevent other couples from experiencing the heartbreaking loss that we endured. We are committed to sharing our story and keeping our sweet boy’s memory alive.
To our beautiful Eli: Carrying you inside me and feeling your kicks for the last six months was the greatest privilege and joy of my life. Please know that we wanted you with every fiber of our beings, and we will always love you. We will fight in your memory for the rest of our lives to prevent other families from losing precious, perfect babies like you.
Carolyn Spiro-Levitt is a clinical psychologist. Josh Levitt, who contributed to this essay, is a public relations professional. They are married and live together in New York City. (Want to talk to them? You can email them at email@example.com.)