MotherToBaby study: Sharing my experience for medical research

When you think about pregnancy—it’s truly a beautiful miracle and a bit of a mystery. It feels like a coming of age—your life and body transform to create and foster the growth of a living human being that you immediately fall in love with. Prior to experiencing this, I wasn’t able to grasp or realize how magical and worrisome this time iblogoct3n life can be. For those who battle autoimmune diseases and medical conditions, there’s an extra sense of wonder. With Crohn’s, whether you’re pregnant or not, the disease presents differently in every person. So when you’re pregnant, you can imagine how much more complicated that can feel for the patient and even the doctors.

Areas of wonder include: the long term side effects of medications, how past and current inflammation and disease activity will impact the pregnancy, and what happens if you go through a flare or need to deliver early, etc. One of the most common pregnancy issues in Crohn’s patients is preterm labor and low birth weight. My high risk OB told me that if a woman is going to flare during pregnancy it generally happens 25-30 weeks in, which is obviously a very critical time. Following delivery, some Crohn’s patients flare 2-4 months after the baby is born as your body gets reacclimated to life without the pregnancy hormones. In my mind—if either is going to happen… I’m praying it’s when the baby is already here so that I can endure the flare on my own and not have to worry about harming the baby in any way with IV medications.

When I was a few weeks into my pregnancy I came across a tweet from the Crohn’s and Colitis Foundation about a pregnancy study. I clicked the link, checked out the study, and emailed “MotherToBaby” without hesitation. The study is observational and is conducted by the Organization of Teratology Information Specialists (OTIS) and coordinated by the University of California, San Diego. OTIS is a non-profit organization that is dedicated to learning about the safety and effects of medications used to treat diseases such as Crohn’s during pregnancy. MotherToBaby is considered the most trusted source of evidence-based information on the safety of medications and other exposures during pregnancy and while breastfeeding.

By participating in the long-term study, I have the opportunity to interact with expert staff who have already provided me with support during my pregnancy, while also playing a key role in helping researchers discover more about the safety of medication during pregnancy and in the future. During my first phone interview I was asked if I would want to be tracked for one year or five. I chose five years because I feel that will provide a clearer picture of how my baby boy responded to being in utero while I gave myself Humira injections and took four Lialda pills a day. It gives me such peace of mind to know that he will be looked at once a year by a doctor (free of charge) until he’s in kindergarten to see if there are any areas of concern.

Enrolling in the study is super easy—it involves phone interviews during pregnancy and after birth, as well as the release of medical records from the pregnancy and the pediatrician. The doctors who participate in the study do home visits when your baby arrives, so you don’t even need to leave your house to receive medical attention.

If I can help provide insight into how pregnancy and medication coincide with one another, sharing my story is more than worth it. It’s comforting to know I am one of 100,000 women right now who participate in this study to shed light on birth defect prevention regarding disease, medications, and vaccines during pregnancy.

Interested in learning more? Call 1-877-311-8972 or email MotherToBaby.ucsd.edu to get involved.

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