PIANO Study offers hope and comfort to prospective and current IBD moms

When you live with inflammatory bowel disease (IBD), the question of how your Crohn’s or ulcerative colitis is going to impact conception, pregnancy, and motherhood is top of mind for many women since most of us receive our diagnosis during or before our childbearing years. As I write this, I’m an IBD mom of two and pregnant with my third. However, I was diagnosed with Crohn’s disease at age 21 in 2005 and, at that point, babies weren’t on the brain, but I very much aspired and expected to be a mom in the future. I started on a biologic medication in 2008 and have been giving myself injections ever since. As you plan for a family, you not only have to consider your disease activity, but the safety of the medications you are taking to manage your chronic disease. This can be overwhelming and worrisome for many.

This is where the Pregnancy in Inflammatory Bowel Disease and Neonatal Outcomes (PIANO) study comes in. The observational, multicenter study launched in January 2007 with the main focus to look at whether there is an increased risk for worsened maternal and fetal outcomes when a woman takes a biologic or thiopurine (a type of immunomodulator) therapy during pregnancy. Prior to this, lack of safety data has led many women to discontinue their therapy during pregnancy, which can lead to health repercussions to both mother and child.

“The Crohn’s & Colitis Foundation has been supporting the PIANO registry since 2007, a time when no other mechanism really existed to support this type of work. This registry is free of pharmaceutical funding, so moms can be reassured there is no bias in the interpretation of data and this priceless."

Dr. Uma Mahadevan, principal investigator of the PIANO study

PIANO is the largest prospective study of biologic safety in pregnancy. Dr. Mahadevan and her counterparts recently published findings from the PIANO study in Gastroenterology. After reviewing the study data collected from 2007 through 2019, the results demonstrated that drug exposure did not increase the rate of congenital malformations, spontaneous abortions, preterm birth, low birth weight, and infections during the first year of life. The ongoing study also highlighted that biologic or thiopurine therapy can safely be continued throughout pregnancy in women with IBD to maintain disease control and reduce pregnancy-related adverse events. The data also confirms that disease activity increases the risk for spontaneous abortion, preterm birth, and infections.

As an IBD mom who is currently enrolled in the PIANO study to help drive research for future families, I can’t express enough how comforting and helpful these findings are. Even though I’ve been pregnant four times (miscarried after my first child), and been able to maintain remission throughout each, it still gets difficult at times injecting myself as I lean over my baby bump and feel my baby kick and flutter inside me. I will say, seeing my perfectly healthy four-year-old and two-year-old observe while I give myself my injection is a reminder that I’m doing the best thing for not only my health, but also my unborn child’s, because they are living proof.

The power of being proactive with family planning

Throughout the family planning process and through pregnancy, it’s imperative that women with IBD communicate with their gastroenterologist, obstetrician, maternal fetal medicine doctor, and other members of their care team about their questions and concerns. Prior to trying for my first child, my GI put me on a prescription prenatal vitamin, along with folic acid, seven months before my wedding, knowing we wanted to start our family after we tied the knot. Additionally, I scheduled my colonoscopies prior to when my husband and I planned to try to conceive so my GI could give us the green light and verify that I didn’t have active disease. Being proactive and having a game plan in place for your IBD and your pregnancy will help you feel more in control as you prepare to bring a life into this world and set you up for the greatest success. The American Gastroenterological Association’s IBD Parenthood Project is a fantastic resource to help guide you along the way.

If you are not in remission or struggling through a flare and hoping to get pregnant, communicate those desires with your care team. Working together is an important part of effective partnering to not only help you reach the ultimate goal for IBD treatment – remission – but also enable you to achieve your personal goals, like starting a family.  

A look into the future

The PIANO study not only focuses on pregnancy and the baby’s first year of life, but also follows children of mom’s with IBD until 18 years of age. Along with biologics and thiopurines, Dr. Mahadevan tells me that newer drugs are now being studied, as well as the response to the COVID-19 vaccine among mothers with IBD on therapy, both through cord blood and in breastmilk. I plan to receive my COVID vaccine once I deliver my son in July. As part of the PIANO study, I will submit samples of my breastmilk to help contribute to research about how antibodies from the vaccine are transferred on to my baby.

These findings, and this research, are a huge win for the IBD community and family. The study shows that the benefits of staying on medication through pregnancy far outweigh any risks. As an IBD mom knowing these findings helps me cope with juggling my chronic illness and taking care of not only my little ones, but myself, and not having to feel fearful or guilty for how I do so.