**I’ve partnered with the American Gastroenterological Association (AGA) to bring you this blog post. All opinions and personal experiences expressed are my own.
Two years ago on Christmas Day, my family and I gathered around the Christmas Tree, with only two presents left to open - one for my mom and one for my dad. I was so excited, so I handed them both a gift. As they began to unwrap the gifts, they soon realized what it was, and both of their faces became solemn. I saw the fear in their eyes. For a brief moment it became silent, not a creature was stirring. My little brother and sister asked, “Well, what is it?!” My parents, trying to exude excitement, held up two little onesies. Everyone seemed confused, and I was confused as to why nobody was excited! Suddenly, my little sister shouted “We are having a baby!” My little brother asked “Who, who is having a baby?!” I screamed, “Candice is having twins!!” Everyone was excited, jumping, screaming and crying! All was well. About a month or two later, my expecting, older sister and I recalled that day around the Christmas Tree, laughing. And then my sister said, “Well, you know mom and dad thought it was you...the presents, the poem, the announcement, everything.” And then I realized. My family thought I was pregnant and everyone was terrified.
For as long as I can remember, I’ve been told that I would not be able to have children and/or that I shouldn’t have children. I have always kind of imagined the movie ‘Steel Magnolias,” when I thought of my ability to have children. If you’ve watched the movie then you know what I’m referring to. So really, that’s all my family and I have ever known, that “Gaylyn can’t have any children.” Because of this, I have grown to understand and accept that aspect of my life.
If you follow me on my personal Instagram, you probably know that I am totally obsessed, head over heels, completely in love with my nephews. Because I am always posting about my nephews, everyone always asks if I have baby fever. My answer is always the simple “No, I don’t.” But what they don’t know is that I’ve always been incredibly terrified of having kids, and for the longest time I was not sure if it was even physically possible to have my own kids. In addition, due to the severity of my Crohn’s disease, I suffer from PTSD. The thought of having another surgery scares the hell out of me. Quite frankly, it has been the absolute last thing on my mind. Well, I take that last statement back, it has most definitely crossed my mind. For the past 7 years at my annual wellness visits, I’ve asked my OB/GYN, “Will I be able to have kids?” This past year, I thought about freezing my eggs, and signed up to attend a seminar about it, but I got sick and couldn’t attend. Go figure. Sometimes it feels like I am always sick. Being chronically ill affects every single part of your life.
When it comes to having children of my own, I’ve thought, “Would it be fair for my future child or children to have a mother that is ill, that may not be able to participate or show up like most?” To be completely honest, it scares me when I think about having children and the ability to care for a child. At times, I struggle with taking care of myself. At times, my bad days turn into bad months. When you have repeatedly been told that you should not have kids you begin to think, “Well yeah, maybe it’s for the best.” At times, I struggle with seemingly simple tasks like cooking. I can’t stand for extended periods of time. How can I ensure that my children will eat? I, at times, am incredibly fatigued, and all I can do is sleep. Millions of questions like this plague me when I start thinking about it, and truth be told, sometimes I cry. It’s not that I desperately want kids, not right now anyway, but it is the fact that my disease has taken the option away from me. I feel like there is no way I can physically be the type of mother that I have been so fortunately blessed with, and that scares me.
I can’t think of a time where I didn’t need my mom and I can’t think of a time that my mother wasn’t there – she continues to be by my side through it all. My mom has seen and experienced things that no mom should have to experience because of my illness. She did not sign up for this, but has volunteered countless hours, sleepless nights and unconditional love and devotion. I would not be the person I am today if it wasn’t for my mother and her unconditional love and support. I think it was incredibly fitting that she was able to also attend the launch event of the IBD Parenthood Project with me. After all she is my mother, and personally I don’t know nothin bout birthing no babies (lol)! I imagine having a child that is chronically ill cannot be easy. Chronic illness not only takes from me, but it takes from my family as well. At the launch event, my mother was just as excited as I was to be in attendance. At several times during the event, I looked over to see her speaking with the physicians, asking questions, listening and sharing our story. She was taking it all in. Not only does the IBD Parenthood Project give women living with IBD a sense of hope, it gives hope to our families as well; it gave both my mother and I hope that day.
At the IBD Parenthood Project launch event, I learned that women with IBD are three times more likely to voluntarily choose to not have children, which makes a lot of sense, because I was one of them. Between me and you (and the world wide web, haha), I think it might take some time for me to unlearn the incredible fear that has been impressed upon me by my trusted physicians regarding my ability to have children. I think that is why it is incredibly important that the IBD Parenthood Project exists, so that the fear and misconceptions that women with IBD, such as myself, have surrounding pregnancy and childbirth will no longer exist. After leaving the IBD Parenthood Project launch event and reading more about it on the website, I felt inspired with a new sense of hope for myself, as well as other women I know.
Some of the resources on the IBD Parenthood Project website (https://goo.gl/9nSCEk/) include a patient toolkit (https://bit.ly/2Raz9zN) featuring easy-to-follow infographics, a flow diagram outlining your “care team” of physicians, a preconception checklist, and more for women with IBD, as it relates to family planning. This project really eliminates the concern of, “I am not sure where to start!” The toolkit materials answer questions on how to best prepare
yourself and your body for pregnancy, which can be printed from the website to discuss with your healthcare team during your next visit.
I keep mentioning “team,” because it is important that you establish a team of experts that will work together and become your “care team” during the process. This team might include your GI, OB/GYN, maternal-fetal medicine (MFM) subspecialist, pediatrician and lactation specialist. Having a plan in place with your care team can help to ensure a healthy pregnancy, as women with IBD can and do have healthy pregnancies and healthy babies.
I’ve learned that in addition to speaking with my gastroenterologist (GI), I must seek an MFM subspecialist to help coordinate my care if I am thinking of becoming pregnant. It is important to note than an MFM subspecialist is different from a high-risk OB, as they have an additional three years of formal education and are board-certified in maternal-fetal medicine. My mom and I had a chance to speak to an MFM subspecialist at the launch event, and just having that conversation was incredibly reassuring for me. Because of the IBD Parenthood Project, I feel confident that I can have educated, evidence-based conversations with my healthcare team on how to manage my disease, and maybe one day, plan for a family. Also, the IBD Parenthood Project website gives you the opportunity to search for both a GI and an MFM subspecialist through the directory tool on the website.
I feel like I know what you are thinking, so let me say, despite all of this great information, I am not currently contemplating or planning to have a baby. At this point in my life, I am not married, I am not in a serious relationship, nor have I been in a really long time (almost a decade, yikes)! Maybe my feelings or thoughts surrounding having children will change if my relationship status was to change, but I am not sure. But now, thanks to the IBD Parenthood Project, I can begin the conversation with my physicians, and possibly locate and visit an MFM subspecialist, or at least begin the search to find a specialist for the future. Planning a healthy pregnancy really begins before the pregnancy even begins. I feel empowered as a patient and empowered as a woman now that I know and understand my options. Yes, due to my disease severity I am still a little bit scared. But I am less scared and more hopeful that having children may be a possibility for me in the future.