One October evening in 2014, my husband and I were walking home to our apartment in Cambridge after having dinner at our favorite Thai place. Somehow in that 15 minute walk the subject of having children came up. It was a sensitive topic for me. As someone with a chronic illness, I don’t really have the luxury of just getting pregnant willy-nilly and expecting to have a “normal” pregnancy experience. There is nothing “normal” about type 1 diabetes–my body is in a constant state of flux that I battle every day.
So when my husband started talking about how we should have kids, naturally my response was one of fear. My health was a problem.
I remember feeling irritated with my husband. Perhaps not so much irritated as misunderstood. He didn’t have to live with a chronic illness. He doesn’t realize how big of an undertaking a pregnancy felt to me, how much of a commitment–not only to being a parent, etc., like everyone else goes through, but also to a level of blood sugar management that I, for a while, didn’t think was possible. If I screwed something up, it wasn’t just me paying for it: our baby would too. That was a lot of weight on my shoulders. And it was enough to keep me from wanting to have kids for a long time.
But something happened that night. I’m not sure what it was, but for the first time, somewhere buried underneath that overwhelming sense of fear was a spark of hope. Maybe I could do this.
And on January 15, 2016, I did! Our first daughter was born healthy, beautiful, and perfect and I was complication free (putting aside a C-section that was a result of baby being breech–I could only control so much!).
Now I know only a small percentage of people who read this are high risk mamas, but I still felt like this was an important post to write. When I googled “type 1 diabetes pregnancy” a few years ago, the pickings for advice, support and direction were slim. Hopefully these six tips on preparing for a high risk pregnancy will change that.
Disclaimer Time: Before I begin, let me acknowledge that I understand this can be a sensitive topic for many, so please read at your discretion. Depending on the illness, pregnancy may not be safe or advisable for some, so please consult with a medical professional who specializes in your illness before attempting to get pregnant. Also, I am speaking mainly from the experience of someone who has type 1 diabetes, so some of how I see things or what I say may not apply to you. In that case, don’t be afraid to reach out to others in your position and see how their experiences may differ from mine. Please note that I am not a medical professional and advice contained in this post is not medical advice. It is the reader’s responsibility to verify any information found in this post and on this blog with a qualified healthcare professional.
TIP #1: RESEARCH YOUR RISKS, THEN READ TWICE AS MANY SUCCESS STORIES
One of the most irritating things about preparing for pregnancy with a chronic illness is that medical professionals and informational websites LOVE to throw out scary statistics. They throw your odds of failure around like they’re a given and don’t share the same level of data about your likelihood of success.
Here’s an example: Women with diabetes are four times more likely to have a baby born with birth defects. True story. But not the whole story. This figure takes into account both type 1 and type 2 diabetes and all levels of blood sugar control–good and not so good. Unfortunately, it’s a LOT easier to have poorly controlled glucose than well controlled glucose, especially during pregnancy, and that truth is going to affect these statistics dramatically.
The fact of the matter is this: Birth defects are actually quite rare for women with type 1 diabetes (totally insulin dependent!) and with an A1c as close to 6% or less (without significant episodes of hypoglycemia), your baby’s risk of birth defects is virtually just as low as the normal, non-diabetic population!
“Keep in mind that over seventy percent of birth defects in babies of women with diabetes could be prevented by pre-conception care. If you take steps before pregnancy, your chance of having a healthy baby rises to that of the general population.” –Source
The takeaway is this: Make sure your health is where it needs to be to have a baby, if only for your own peace of mind later when the going gets tough. But then start to focus more on your likelihood of having a successful pregnancy and less on the chances of something going wrong. Reach out to other women with your condition and learn what they went through, all the while keeping in mind that YOU are not bound by fate to encounter the same difficulties they faced. It may help to specifically ask to hear success stories, especially if anxiety and worry tend to be stumbling blocks for you.
TIP #2: GET IN SHAPE
Your body is going to be your baby’s home for 40 weeks. Make it a good one! Being in shape is already hugely beneficial for a pregnant woman, chronic illness or not. And for some illnesses, getting exercise can be hugely beneficial to the overall management of that illness.
This is especially true for diabetes. When I started working out a couple years ago, I found my blood sugar all of a sudden dipping low in the morning a full 14 hours after hitting the gym–so much so that I was able to take less insulin at that time of day. That just goes to show you how exercise can have a continuous positive effect on your body even when you’re not actively working out.
If you plan to work out (gently) while pregnant or would like to start to, understanding how exercise affects the management of your condition BEFORE pregnancy can be immensely helpful. When I exercise in the afternoon, my blood sugar plummets. So much so that the only way to avoid a hypoglycemia is to start out with a blood glucose of around 200 and turn my insulin pump completely off for the duration of my workout. It was more convenient for me to work out in the morning before work, but when I did that, I found my blood sugar skyrocketed! It took some time to troubleshoot, but I eventually learned that for me, a morning workout required a very specific insulin regimen timed just right. This is NOT something I would have wanted to troubleshoot while pregnant, so I was glad that I learned this well beforehand.
And keep in mind that sometimes being in shape doesn’t mean being “skinny.” It might just mean being in the best shape YOU can reasonably attain before trying to conceive and understanding how physical exertion affects your body with different levels of activity and at different times of day. When I got pregnant, I actually weighed more than I ever weighed in my life. But my cardiovascular health was MUCH better than it had ever been and my glucose control was impeccable (if I may toot my own horn in saying so).
TIP #3: JOIN SUPPORT GROUPS, BUT BEWARE
Psychological support during pregnancy with a chronic illness is incredibly important. Knowing that you are not alone, that your experiences and feelings are valid and shared by others can make a huge difference in how you perceive what you are going through and how you then feel about it. But there are certain things of which you should beware:
Falling Down the Rabbit Hole. When you’re in a high risk pregnancy, you’re going to hear from a lot of women who have high risk kinds of problems. And when you hear about those same kinds of problems happening again and again, it becomes hard not to think that those same problems will happen to you. It was this kind of thinking that made me so terrified of getting pregnant to begin with!
Fear Mongering. Those scary articles that dwell on your chances of failure? Don’t click them. I’d probably go so far as to say don’t even share them unless you’re specifically asked to. And steer clear of anyone who is quick to tell you, unasked, how terrible their experience was!
Fragile Support. Sometimes you just need to complain and be met with listening ears who understand. But sometimes, allowing yourself to be those ears over and over again can be emotionally draining. Only engage if you feel you’re up to it. It’s hard to be a pillar of support for someone else when you yourself are crumbling.
When I was TTC and pregnant, I swore I would never join a “normal” pregnancy support group. I was convinced the women there wouldn’t understand me or my situation at all. It wasn’t until a friend added me to her mainstream pregnancy group (which was fortunately well-moderated) that I realized: By falling down the rabbit hole on too many occasions, I robbed myself of some of the joy of pregnancy and trying to conceive. I allowed myself to experience fear of situations that weren’t mine and partake in the anxiety of others when I wasn’t in a place to handle it myself.
In short, surround yourself with people who give you strength and lift you up. And it helps if at least some of those people understand what you’re going through.
TIP #4: BECOME AN EXPERT
One of the most valuable pieces of advice I was given when I was diagnosed was “know more about your disease than your doctors do.” When you’re pregnant and vulnerable to decision-makers in white coats, this is especially important. In advance of getting pregnant, do your best to know everything you need to about not only the basic ABCs of your disease but how it specifically affects YOU. What does stress do to you? Exercise? Anxiety? Different foods? Varying amounts of sleep? How does your body respond at different times of day? Are your medication needs figured out to a T, or do they need adjusting?
Do research on how pregnancy hormones might affect your disease and find out what you might be able to do to combat this. Digest as much information as you can so that when it’s decision making time, you can make an informed decision rather than putting yourself in a position down the road where you must rely on the advice of one or two other people. Which brings me to my next point:
TIP #5: FIND THE RIGHT MEDICAL TEAM
Your doctor or midwife is going to be by your side for a lot of this pregnancy journey, so make sure you have someone you trust and can feel comfortable with. For me, it was important to have someone who would let me sit behind the wheel when it came to managing my blood sugar and who understood that yes, I do actually know what I’m talking about when it comes to my disease and my body.
It was also important to me that my OB felt the same way I did about certain aspects of my delivery. For example, it used to be customary to induce a woman with diabetes at 38 or 39 weeks, since women with diabetes are at risk for having a “big baby.” My doctor agreed with me that this practice was out-of-date and unnecessary, especially with diabetes as carefully managed as mine.
Sometimes, depending on your condition, you may need a larger team of professionals to help you through this process, so keep that in mind as well. As someone with type 1 diabetes, I needed an OB, an MFM (maternal fetal medicine specialist or perinatologist), an endocrinologist, and an eye doc. Be aware that sometimes certain doctors will not see you while you are pregnant or may not really understand how pregnancy specifically affects your disease! My endocrinologist had no idea that it is common for blood glucose to run very low in the first trimester and my friend’s endo flat out said he did not feel comfortable working with her while she was pregnant.
Some questions you might want to ask your practitioner as you’re interviewing:
- How many people with my condition/in my situation have you worked with? (This one’s important!)
- What is your stance on inducing labor? What is the maximum number of weeks gestation I would be allowed to reach before induction and why?
- How will my condition be managed during pregnancy? During the birth itself? What, if anything, will likely be different about my birth experience given my situation?
- What kind of accommodations can be made for me given my birth preferences? (e.g. if you would like a natural birth, if skin-to-skin is possible in the OR in the event of a c section, etc.)
- How can I reach you if I have questions? What is the best way to contact you or give you my medical data?
- Who else in this practice might I be working with?
Now that I’ve had my baby, my perspective on child birth has changed quite a bit. Next time I will likely see a new practitioner, preferably a midwife who would be willing to work in conjunction with an MFM. Not because my OB did a bad job or because I didn’t like him, but rather because I need someone who can help me have the different kind of birth experience I’m looking for and who will be truly supportive of a VBAC.
TIP #6: CHANGE THE WAY YOU SEE SUCCESS
A couple years ago when I was really struggling to attain an unattainable level of diabetes perfection, I learned something about success: It’s what you make of it. It used to be that I would check my blood sugar, get a “bad” number and immediately feel failure. It took a while, but eventually I started to see those numbers not as measures of my worth but as simply data points.
Sometimes you get wonky data points. But that’s all they are! There will always be another data point ahead, so look forward to that one instead of dwelling on the one that is less than ideal. Without this mindset, I probably would have driven myself crazy as I worked to get my blood sugar in a baby-friendly zone prior to pregnancy.
Success is going to look different depending on your condition, so think about what it looks like for you. Regardless of your condition there is one thing success almost never is: Perfection.
What did you find the most helpful in planning your high risk pregnancy? Feel free to share in the comments below, or just leave some love if you enjoyed the post!
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