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Having Kids with Chronic Illness

Well hello there.  It's been a while since I contributed to our blog.  I went and had another baby last October and let's just say baby brain is really a thing.  While I've been back at work since mid-January, I've really only recently gotten back to what I'd call full mental capacity where I can muster any type of writing creativity.  That's a good 7 months of what I can only refer to is this mild brain fog, where you're able to do what you need to do but adding in anything beyond the core functions of your life, yeah, well, forget that nonsense.


A few weeks ago Steph wrote a post about parents of kids with Chronic illness.  If you haven't read it, you should go check it out.

So today I want to write a few things on having kids when you have a chronic illness.  This comes up with my clients pretty often, whether it's deciding to even have kids to coping once they're around.   But most of what I'll write is more from my personal experience.

If you met me more than 5 years ago, I'd be living the DINK (dual income no kids) life.  I had zero intention of having any children.  My husband was seemingly in the same boat.  I joked that my biological clock was digital because there was absolutely no ticking going on and I was in early 30s.  Part of that, I believe, was having Crohn's disease.  Not because I was really sick, I've been pretty fortunate in that department.  But a big concern I had was passing this lovely disease down to my offspring, even though I know the statistics based on genetic backgrounds (around 7% if only 1 parent has the gene).  That's a 93% chance my kids won't have it.  Those are pretty good odds.  But if I let the "yeah, but..." creep in, it certainly affected my decision making.  However, if you told me I had a 93% chance of winning next week's PowerBall, you know I'd be out buying a ticket.

Tip #1:  Learn about the odds your illness could be passed down.  And if they're overwhelmingly in favor that it won't happen, don't let that deter you from having a child.

Then biology kicked in big time and I went from no ticking to alarms going off in my head.  So we went and had ourselves a daughter.  My first pregnancy was uneventful.  I was taking a TNF biologic medication at the time, so my focus became understanding what, exactly, this drug could do to the baby pre- and post-delivery.  Unfortunately there were ZERO studies on the drug in pregnancy, so I had to go off of anecdotal evidence from my doctor.  I sought a second opinion from a gastroenterologist who knew women's stuff and we came up with a game plan where I took the risk and stopped the medication around week 32 of my pregnancy.

Tip #2:  Learn about your medications and how they may impact pregnancy and, if you decide to breastfeed, how they may impact lactation.  If your doctor doesn't know, get a second opinion.  This should be a joint decision between you and your physician.

I decided to breastfeed so that also affected my decisions about medications, and I opted to stay off of medications until I had a problem.  About 50% of women with Crohn's will flare after pregnancy.  I was fortunate in that I didn't flare but also stayed in med-free remission for 3 years.  We don't exactly know why, but doctors have seen this.  Kind of like the anecdotal evidence for the medications - not much research out there on it but it happens.

Tip #3:  Remember, the worst case scenario probably won't happen.  But if it does, you can handle it.

Then I lost my mind and decided to have a second, and last, baby.  This time I went into pregnancy on no medications and I had what I'd call a minor flare.  My doctor probably would have disagreed with the term "minor" but I've noticed I'm much less of an alarmist, rather walking a fine line of denial and seeking appropriate care.  So I showed up at my doctor's office 6 months pregnant asking her to fix Humpty Dumpty and get me through the last few months of my pregnancy.  I did at least have the courtesy to email her when I got pregnant and keep her posted every month as to how I was doing.  This involved a lot of discussion about what medications to use, for how long, and also alternative treatments to ensure I was getting enough nutrition.

Tip #4:  Feeling part of the treatment team is important regardless, but becomes especially salient when you're pregnant.  Find a doctor who you trust and lets you make decisions based on information they provide you and their recommendations.  No time for the "My Way or the Highway" mentality.

Needless to say, I made it to term and had a healthy baby boy.  Because I'm breastfeeding again, I'm back off of medications and am keeping hold of remission.  Maybe I'll luck out and get another few years out of the deal.  But with chronic illness comes uncertainty, so for now I'm just enjoying each day.

With pregnancy and motherhood comes a lot of emotions, some of which are chalked up to hormonal changes that we experience.  But there's more to it than that.  And I encourage you to listen to your gut about things, and not allow others, including a doctor, to dismiss the psychological aspects of medical decisions should they need to be made either while you're pregnant or after.  For example, stopping breastfeeding can be a very emotional experience if it's before mom or baby are ready.  While this can happen if we need to start a medication that isn't nursing-friendly, it's important to acknowledge that there may be a flood of emotions that comes with that decision.


Tip #5:  Your emotions are important and should never be dismissed, especially under the pretense of being overly hormonal.  Your experience matters and should be taken into account in treatment planning.

It's good to be back.  I hope this blog post makes some sense and is helpful.  If not, I'll just revert back to blaming baby brain.  That's gotta be good for at least a few more months, right?

Best,
Dr. T

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