I remember the first phone call when I was pregnant with my oldest as a soon-to-be IBD mom. A researcher from Mother to Baby called me when I was newly pregnant and leaving work—I sat in my car in a parking lot, as she asked me several questions about my health, well-being, medication, and pregnancy thus far. That was Fall of 2016. Fast forward to now—and my oldest, Reid, just graduated from kindergarten. When I was diagnosed with Crohn’s disease at age 21 in 2005, one of my biggest fears was whether my chronic illness was going to rob me of motherhood. Back then, I was nowhere near ready to settle down, but the worry was always in the back of my mind.
When my husband and I got married in June 2016 and I was 10 months into surgical remission, we knew we needed to capitalize on my IBD finally being under control. Luckily, we got pregnant one month after getting married. Shortly thereafter, I started researching pregnancy studies for IBD moms. Lights, Camera, Crohn’s launched two days before I received a positive pregnancy test. I was fresh into my advocacy and had never been pregnant before. I didn’t have a community of IBD moms to lean on for questions or support as I navigated the unknown.
I came across information about Mother to Baby online and ended up being a part of their pregnancy studies for my first two children. The studies were different, but I had such a positive experience with Reid, that I decided to participate again with my daughter, Sophia. Reid’s study was a 5-year look at how Humira impacts babies in utero through kindergarten. When I was initially pregnant with him, this felt light years away. And here we are. Over the course of his pregnancy and until November 2022, I completed surveys, did phone interviews, had an in-person meeting with a doctor who came to my home and looked him over in front of me for any health anomalies, and most recently did an in-person cognitive neurobehavioral assessment at a nearby hotel with researchers.
We just got the results. While it’s rewarding to participate in IBD studies and interesting to learn, there’s always a part of you that worries about the findings and if mom guilt will ensue. It’s been reassuring and comforting to see my healthy kids, who were exposed to Humira in utero through the 3rd trimester, thrive and excel with milestones and in school.
The findings of the study
In November 2022, Reid and I met up at a nearby hotel with two researchers who provided neurodevelopmental behavioral evaluations for both of us. Reid’s assessment used a series of questions, games, and puzzles to help researchers determine his development of language ability, memory skills, and problem-solving abilities. The tests were selected to provide an evaluation of general mental ability and to describe specific abilities in areas of verbal knowledge and reasoning and visual-perceptual reasoning and organization. The tests were intense, I was proud of him for how he handled himself during the process.
According to Mother To Baby, “this battery of tests is best suited to examine the similarities and differences among groups of children. While it was not adapted for Reid’s individual characteristics, it can highlight general strengths and weaknesses in a child’s cognitive profile and indicate potential concerns when present.”
Behavioral Observations: “Reid was personable and interacted with both administrators on his arrival. He had a very positive attitude toward testing and quickly became comfortable with administration. He was engaged and attentive to the materials, listened attentively to the examiner and provided effortful responses even as questions became more difficult. Reid demonstrated good cooperation and attitude by following instructions and requiring minimal to no redirection from the administrators of his mother. He was focused and friendly for the full duration of testing.”
Summary of Assessment Results: “Tests were administered in a single testing session with one short break. The Wechsler Preschool and Primary Scale of Intelligence (WPPSI-IV) was selected to provide an evaluation of Reid’s general mental ability and to describe specific abilities in areas of verbal knowledge and reasoning and visual-perceptual reasoning and organization. This battery of tests is best suited to examine the similarities and differences in ability among similarly aged groups of children. While it was not adapted for Reid’s individual characteristics, it can highlight general strengths and weaknesses as well as potential concerns when present.”
The intelligence test was comprised of 10 subtests which measured a variety of verbal and nonverbal skills. Reid achieved a composite score in the average range. In the working memory category and spatial working memory, Reid performed in the high average range, which required him to remember and identify pictures that had previously been shown to him. On tasks that measured visual-spatial abilities, Reid scored below average. These tasks required him to synthesize visual stimuli to recreate block design.
“Reid was highly focused while processing visual stimuli. Overall, Reid is a bright and enthusiastic child. He was a pleasure to work with.”
Along with Reid’s assessment, I was also interviewed and performed tasks with an examiner on the other side of the room. I was assessed in the adjustment and life context. Tests included the Center for Epidemiological Studies Depression Scale and Parent Stress Index. My scores were within normal limits and my general mental ability also scored in the average range. Not gonna lie, the testing was challenging!
Reflecting on my experience
As an IBD mom of a 6-year-old, 4-year-old, and 22-month-old, who participated in pregnancy research during each of my pregnancies, I can’t begin to tell you how incredibly rewarding it is to know that your personal experience is helping to drive the future of care for women in our community who have hopes of one day being a mother. Sure, it takes a little bit of time and effort, but the data and research to show the safety and efficacy of medications while pregnant and breastfeeding is so needed. It’s comforting to know Reid is right where he needs to be cognitively and healthy physically, despite my high-risk pregnancy and exposure to Humira until 39 weeks gestation. We need more women to willingly step up to the plate and share their journeys to help guide the future of IBD motherhood and show all that’s possible despite our disease.
Opportunities to participate in research
Many people need to take medication during pregnancy to manage and treat their IBD. Yet, according to the Mother To Baby website, fewer than 10% of medications have enough information to determine their safety for use in pregnancy.
Do you have Crohn’s disease? Are you currently pregnant? If you answered “yes” to both questions, you may be able to help Mother To Baby advance the knowledge of how managing IBD in pregnancy impacts a developing baby. Click here to learn about how you can impact the health of future families by joining the Crohn’s Disease and Pregnancy Study.