Crohn’s and Pregnancy: the Big Decision

Someone with Crohn’s recently said to me that she wasn’t sure if she’s going to have kids, because she doesn’t want to pass Crohn’s on. I can’t blame her – she’s 3rd generation with Crohn’s, and so it seems theoretically likely her child(ren) would have it. I think everyone with it goes through that questioning period. I know I did.

Ultimately, my heart beat out my lower intestine. I wanted to start a family. I wanted kids and always have. And since my husband is tall, it might be the only chance to introduce some height into my family. There were so many reasons in the “pros” column, that it quickly outweighed the one big WHAT IF in the “cons.”

If my daughter develops Crohn’s, I’ll never forgive myself. I know this is true.

But that said, I don’t think that for me it was reason enough to not have a child. And now that I’m a mom, I know I will blame everything, from papercuts to heartache, on myself. I love my daughter more than anything in the world, so I want her to have everything in the world except pain, and if she can’t then I blame me. I’m a typical mom.

But what if she doesn’t get it? What if she stays healthy? What if she ends up being the doctor or researcher who cures this after all? What if…

So for her, I’ll fight for more research around Crohn’s disease treatments and cures. And for her, I’ll stay healthy myself. 

And that fight started before I was a mom, before she was even a twinkle in my eye. A few years ago I was having a flare, and having trouble figuring out what course of treatment would work best. Working with my doctor, we decided on Remicade, and my first few treatments went so well that I called him and told him I suspected I was in remission. Already! “Go get a blood test so we can check for inflammation, and then come into my office,” said awesome Dr. D.  He knew that starting a family was my goal. I talked about it in every visit. I obsessed with him over what treatment would be okay to stay on while pregnant. I went to learning sessions and spent hours surfing the web for information on genetics and fertility and on and on and on and went back to him every week with reports. My goal was clear: Remission, then baby. Really, remission because of baby.

So I started Remicade, and it went really well. And then, per Dr. D, Ihad my blood test, and a few days later I went to his office. I sat in the exam room waiting for him to come in – it’s a busy, large practice, and there are always a ton of people buzzing around, nurses, patients, doctors, receptionists, etc. Dr. D walked over to the open door of my exam room and in his booming voice said, “All right Carly! Ready to get pregnant?” And slammed the door behind him. I can only imagine what everyone standing in the hall thought.

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3 responses »

  1. You probably wouldn’t have preferred not being born to living with Crohn’s, right? So if your child should get Crohn’s, well, there is that perspective to think about. Besides, as you rightly realize, a mother feels guilty about anything negative or painful her kid goes thru, so it’s unavoidable. Congratulations on going with your heart.

  2. Each person has to decide what’s right for him or her. I’m 56 now and never had children because I didn’t want to pass along whatever lifetime undiagnosed bowel problem I had. My symptoms disrupted my life that much. No one knew what to do, so they did nothing. It wasn’t until this year — after having become disabled at age 50 and finally getting on Social Security Disability and Medicare that surgeons at the Cleveland Clinic found the source of my problem — an intestinal intussusception (sort of like a kinked hose effect). This problem — ignored by multiple doctors throughout my lifetime — made it impossible for me to have a bowel movement without enemas and laxatives. It caused a back up of toxins and waste that led to leaky gut syndrome, autoimmune disease affecting my endocrine system, ulcerative colitis, multiple infections (viral, fungal and bacterial), venous congestion and ultimately caused my spine to degenerate. The operation to fix the problem went well but the surgeons told me that so much damage occurred to my colon due to not being treated that they didn’t think the surgery would help that much if at all and suspected I’d need a second surgery, which I’ve been putting off –hoping that a regime of probiotics and nutrient and cleansing IVs might gradually improve the situation. We’ll see. For me, I feel I made the right decision in not having a child, because my condition was congenital. Chances of passing on the bane of my life were high. And even with all the fancy, expensive medical equipment used for testing, surgeons told me that it is still very difficult to detect problems in the colon. I feel I saved a life from enduring the same pain and suffering I endured.

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