Living as a patient can be claustrophobic and transparent all at the same time. The disease can leave your body and mind vulnerable to other conditions as well as people’s opinions. There are opinions on diet, medications, lifestyle choices, and sometimes family planning. The decision to start a family should be a personal one between you and your partner, or one you make alone. But our parents, family, friends, and social media followers add their two cents about parenting with inflammatory bowel disease (IBD). Negative opinions often come from a combination of ignorance and fear about living with IBD. If you have decided to have a child or a few children, know that you made the best decision for you and the person you plan to raise. Whether you decide to become pregnant, become a mother via surrogacy, adoption or fostering, let me be the first to congratulate you. But what of the comments, critics, unsolicited advice, and concerns flying into your personal space?
Bust Some Myths
The best way to fight ignorance is with education. We are in the information age, where we have facts at our fingertips, but we also have misinformation and conspiracy theories overshadowing facts and lighting a path for unfounded fears. Here are a few facts you can share with those who are expressing concerns.
“Your child will get IBD!”
The truth of the matter is, IBD is an autoimmune disease, and you may be genetically predisposed to any autoimmune disease. However, more than likely, you are a patient living with IBD coming from two IBD-free parents. Yes, IBD-free people will often give birth to children who develop IBD. In fact, the percentage of passing on Crohn’s disease or ulcerative colitis is low, and is estimated to be about only 10% (Noble, et al). And as my mom told me, when I was pregnant, “Your child may not get IBD, but he/she will have some sort of challenge in life. We ALL have something. IBD is YOUR something. Who knows what the baby’s something may be.”
“You are burdening your child with your disease!”
Let’s start with that word, burden. You, my dear, are not a burden. Your disease is not a burden. My greatest fear was that my child would resent me for not being the “normal mom.” But what I found was the modifications to my life I had to make to accommodate my health and fatigue, actually brought me and my child closer together. I stayed at home, instead of going back to work. So, that brought one-on-one time where I focused on his education and socialization. He learned very early on how to soothe and occupy himself. He’s comfortable and empathetic toward people with disabilities and challenges. He has been able to board airplanes and rides first. And he has an entire community outside of our circle of family and friends that are rooting for him and encourage him. As frustrating and as horrible of a disease IBD can be, there are some ways it has helped to foster a closer relationship between me and my son.
“You will not be able to properly parent!”
No parent is perfect. I find myself having pitfalls that have nothing to do with living with IBD and other chronic conditions. I’m just a human being trying to figure it out as I go along. Kids don’t come with a manual and parenthood is in a constant state of evolution as you try to adapt to this human being who is just as imperfect as you are. Yes, there will be some modifications to your life as you navigate through, but this doesn’t make you any less of a parent. It makes you human.
“You will have to stop treatment!”
The advancement of IBD research has helped women family plan while treating their IBD properly. There are a lot of treatments that have been shown to be safe for mother and baby during pregnancy and breastfeeding. One of our partners, Mother To Baby, is a fantastic source of information on pregnancy and postpartum treatment options.
“IBD complicates fertility!”
Women with IBD, in general, do not have a reduction in fertility. IBD alone will not cause fertility issues, but every patient will have an individualized situation. Some of the extraintestinal symptoms and complications can affect the reproductive system, as well as the breastfeeding and postpartum experience. For example, chronic dehydration, malnutrition, and rapid weight loss and gain may affect your ability to conceive and/or maintain a healthy pregnancy. But there are also a multitude of other reasons you may be experiencing difficulty, just like women who do not have IBD. Fertility may not be a problem for you, if you want to start a family.
Being a mom is one of the greatest gifts in the world. Sure, I’m biased because I’m 9 years into my motherhood journey. But I cannot imagine being me without being “Mom.” Motherhood is a motivation that is unmatched in getting me through fighting IBD on a daily basis. And seeing the beauty in the world through a child’s eyes is unending.
Noble CL, Arnott IDR. What is the risk that a child will develop inflammatory bowel disease if one or both parents have IBD? Inflamm Bowel Dis. 2008;14:S22-S23. Available at: https://onlinelibrary.wiley.com/doi/full/10.1002/ibd.20575