The Fear of Passing On My Crohn’s Disease
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As a parent with a chronic illness, I face a few things that keep me up at night, one of which is the fear of passing on my condition to my kids.
Crohn’s disease is an inflammatory bowel disease (IBD) marked by chronic inflammation of the digestive tract and unpleasant and often debilitating symptoms like diarrhea, constipation, nausea, and pain. There is no cure for Crohn’s, which is a huge contributing factor in my anxiety around my kids inheriting it.
When I was in the process of trying to get pregnant, I asked every doctor I saw about my concern about passing on the disease. I was told by most that IBD was not hereditary so I didn’t need to worry. This didn’t sit well with me because a lot of my family members were affected by the disease: My mother, sister, and grandmother all had Crohn’s, too. One doctor did tell me that he believed there was a hereditary link, but there weren’t enough studies for him to feel comfortable saying it definitely was a risk.
Whether IBD is genetic was not going to affect my decision to have kids, but I wanted to know if there was anything I could do to prevent my kids from inheriting it. Without any definitive answers, I continued to do my own research and be vigilant for symptoms when my baby arrived.
My son was born in 2020. He was happy and healthy, although he did experience the occasional constipation, which was normal for his age.
Then in 2022, I had another child, this time a girl. She immediately started experiencing gastrointestinal issues: She was having constant mucus-laden diarrhea and reflux, and was frequently crying inconsolably, which led us to believe she was in pain. She wasn’t gaining weight and had a rash all over her face and torso.
A Mother Searches for Answers
As a mom, this was my worst nightmare. I felt like my baby was hurting, and I had been through similar pain.
We were seeing a pediatrician, a lactation consultant, and a pediatric chiropractor regularly to help with feeding in hopes that she would start to gain weight. Despite our efforts, she was gaining very little weight and was still miserable. I mentioned potential IBD to the pediatrician, and she knew my history but reassured me that some babies are just collicky or have a milk protein allergy. (IBD is very rare in children under 6 years old so this wasn’t even on the radar of providers we were seeing.) The doctor was confident that it was not a serious problem.
This time hit our family hard. I would stay up with my daughter at night trying to comfort her as we both cried. I felt like it was my fault that she was so sick because of my history of IBD. No matter how much anyone assured me that it wasn’t my fault, I just couldn’t get past the feeling. I was doing everything I could for her. At this point I felt in my gut that she needed to see a pediatric gastroenterologist, but the pediatrician said we should wait a little longer. I was self-conscious that I was overreacting as an anxious mom and projecting my own past experiences. I didn’t want to escalate the situation unnecessarily so I didn’t push back. I reassured myself by repeatedly Googling the rate of infants with IBD, which is extremely low.
My daughter began to have bloody diarrhea, and the pediatrician diagnosed her with allergic colitis. It sounded scary and awfully close to ulcerative colitis, which is another IBD that runs in my family. The pediatrician explained that allergic colitis is inflammation of the digestive tract due to exposure to allergens. It was expected that my daughter would see improvement after eliminating dairy and soy from her diet. I was breastfeeding at the time, so I immediately cut out all of these foods so I was certain these allergens weren’t getting to her. I was hopeful for better days ahead and figured since we had an answer, there was no need for the pediatric doctor.
After a month (we had to give the allergens time to clear from my system), she actually seemed to be getting worse. A particularly emotional and bloody bout of diarrhea was my breaking point. We were in the changing area in the mall, and I sat on the floor cradling my daughter, who was screaming in pain, and holding her bloody diaper. I was so scared for her. I also felt like I was failing her as a mom.
At that moment I made a decision to stop worrying about being the overreacting mom and scheduled an appointment with a highly recommended pediatric doctor in our area. By the time of our appointment, my daughter was hovering at a very low weight and looked to be in pain.
The pediatric doctor spent at least a half an hour with us going over her symptoms, examining her, and coming up with a care plan. He explained allergic colitis in more detail and discussed the topic of hereditary IBD. He explained that IBD doesn’t usually start to develop this young, but it is commonly diagnosed in childhood so it could develop down the line. Sometimes these early gastrointestinal issues could be indicative of IBD down the road, and considering my family history, he told me that getting my daughter in to see a gastrointestinal specialist was a smart choice.
While there is no definitive way to prevent IBD, early intervention on GI issues can hopefully help to prevent worsening symptoms down the road. He shared some more evidence-backed information around the hereditary component of IBD, which was surprising to me. A child with one parent who has Crohn’s has a 10 percent chance of developing IBD. In a child with two parents with Crohn’s disease, that number increases to 35 percent. While statistically speaking the odds were in favor of my kids not developing IBD (my husband does not have IBD), there seemed to be some gray areas. Similar to the doctor who shared this opinion with me before I was pregnant, the pediatric doctor said that the research was still developing so the risk could be higher.
My daughter is 10 months old as I write this and doing infinitely better. The pediatric doctor switched her to hypoallergenic formula and increased her caloric intake per bottle. She hit the 29th percentile for weight at her last GI check-in, which had me sobbing with happiness as we left the office. Per the doctor’s recommendation, we have been gradually introducing solids, and after she turns a year old, we will start to introduce allergens under supervision of the doctor. We still don’t know exactly what caused her GI issues. It could be an allergy that she will grow out of or may be an allergy she will have for life. GI symptoms could become a distant memory for her, or she could go on to develop IBD like her mom. If we are using the current guidance, there is a good chance that my daughter won’t develop IBD, but some more recent studies show that there could be a great risk. Either way I know that I am doing everything I can to make sure that she has the care she needs, and I am her biggest advocate.
Following Her Gut
Looking back at my experience, I realize how much more difficult it was because of my own Crohn’s diagnosis. I thought that since I had experience with GI issues, I would be more equipped to navigate the situation. In the long run, I believe this to be true. In the moment, though, I questioned my instincts because I was worried about overreacting or jumping to conclusions. I let the guilt about my daughter take over and deeply affect my mental health.
I realized how much guilt I held about my own diagnosis. It was manageable when it was a hypothetical situation, but seeing one of my children experience pain so similar to my own struck a chord. I experienced depressive episodes and anxiety during the time she was sick. I started working through my own shame and guilt in therapy, which helped me show up as a better caretaker and advocate for my daughter.
I am glad I eventually decided to follow my gut and seek additional care for my daughter. Looking back on this whole situation makes me realize how little we still know about pediatric IBD or IBD in general. The cause isn’t defined, and there are varying opinions among providers. If you are a parent with a chronic illness, don’t be afraid to speak up about your concerns or push back for more answers. I also urge you to make sure you are caring for yourself. Anytime your child experiences a health problem can be distressing, especially if you have a chronic health problem of your own.
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