The gift registries, baby bumps, ultrasound pictures on Facebook, pink and blue everything, diapers stocked up, and nurseries filled to the brim with all the items of a future not quite yet begun. It’s all there, the excitement of a new life on the way. I can’t wait for that to be me.
I can already see myself decorating a baby room, purchasing a jogging stroller, and walking down the street with my future dog and kid. At times, it’s so close that I can almost reach out and grab it. But then that imagined dreamscape vanishes, evaporating into the things that I’ve learned to accept as fact about pregnancy and type 1 diabetes (T1D).
I’m not pregnant yet, but I dream of becoming pregnant someday soon. I was diagnosed with diabetes at age 6, and after 26 years with T1D, I know I can plow through pregnancy with the same determined attitude of creating a healthy life as my girlfriends who don’t have diabetes. I know that it can be done. I’ve seen it done. But I also know that, for me, it’s going to be really, really hard.
Pregnancy itself doesn’t scare me. My diabetes doesn’t scare me either, as I’ve certainly lived with it long enough to know what to expect most days. However, pregnancy and diabetes together is a different story. That combination contributes to a significantly higher level of worry. Do I have an extra infusion set with me? Where is a juice box in case my blood sugar goes low? Is the battery in my pump charged enough to get me through the day? Did I remember to grab my insulin so I can refill my pump at lunch, or did baby brain take over today?
When I was diagnosed in 1989, life with diabetes seemed pretty simple compared to life today. Come to think of it, everything did. I skipped (sometimes) to school, often reluctantly received my two shots of insulin a day, and routinely checked my blood sugar four times a day (plus whenever else it was necessary). That was it. Life was on schedule, and diabetes management was structured to fit that schedule. There were no insulin pumps, no continuous glucose monitor (CGM), and no data downloads to fight with as I prepare to go see my Certified Diabetes Educator (CDE) and endocrinologist in the same visit. Diabetes management happened on time, every time, with no deviation.
Now, as an adult, everything is an exception to the rule when it comes to diabetes. We learn different strategies for managing diabetes from our healthcare team. We take what we learn there, and we run it through a filter of other people with diabetes that we know and the information that they share. Then we mix in our high stress and active adult lives that sometimes feel like they are at the whim of someone else’s schedule more than our own. Finally, we go get our blood work done, and hope that the results show that we managed to merge all of that information into a quantitative set of numbers that can be labeled “good” by our endocrinologist’s or CDE’s standards.
Although not necessarily a bad thing, these varied sources of information and complexities planted a seed of concern inside of me about someday becoming pregnant with diabetes. As I started to learn more about my type 1 diabetes, I began to read more dialogue about how intensely risky it is for people with type 1 diabetes to have children. It terrified me. It still does.
The dream of becoming pregnant continues, but I can’t help but worry about the future. What if I have a severe low while pregnant and something happens to the kidlet? Every now and then I still go back to the “why me” aspect of diabetes as I observe my friends complaining of sore feet and back pain, restless nights, and acid reflux. To me, that is “normal pregnancy stuff.” What isn’t normal is the explaining to friends how mentally draining staring at CGM trending arrows and carb counting is, and the guilt that I carry over each yellow dot indicating a high blood sugar on the screen of my CGM that has the potential to wreak havoc on my future family. It’s invisible to everyone but me. My husband is the closest anyone will ever get to truly understanding my particular flavor of diabetes, but even he can never fully “get it” without the internal and emotional feelings that come with living every day with this chronic condition. There is routine, and then there is a complete lack thereof, and that is what sometimes defines life with diabetes.
In an effort to manage my anxiety about pregnancy and diabetes, I examined the results of a recent survey that was conducted among the online diabetes patient community Glu (https://myglu.org/), which is part of the T1D Exchange research network, where I work as the Outreach Manager. What the Glu community had to say seemingly confirms so many of the things that I’m a nervous wreck about when it comes to pregnancy and diabetes. There are plenty of questions that need to be explored in greater depth relating to the survey, but the results seem to indicate that there is a greater chance of miscarriage, NICU, pre-eclampsia, and C-sections when pregnancy and diabetes are mixed together.
It’s nerve racking! However, despite the odds, it doesn’t sway me from this dream of being a mother. I know, deep down, that I can do this. I get the daily stares at my arm sporting my Dexcom CGM sensor, and I’m okay. My insulin pump alarms in public or quiet places, and I’m okay. I get the comments relating to my having diabetes by people that don’t understand the complexities of the disease, the different types, and what it truly means to be insulin-dependent, and I’m okay. I have the best husband, family, and friends, some with diabetes and some without, all of which will be as excited for me as I will be to focus on creating a little love to call my own. I know that I can do everything within my power to be the best host for this little dude or dudette that I can possibly be, and I will have the support behind me to succeed, and I will be okay.
I will need my friends to ask me how I’m feeling, and not allow me to brush them off with a cavalier response. I will need to feel vulnerable enough to talk about my situation, and articulate what I need, and trust that I have a pack of pals who will do everything they can to make sure those needs are met. I will need my husband to offer to put in a pump site or a new CGM sensor for me, and make sure there is a stocked box of glucose tabs next to our bed. And because they don’t have to remember all of these things on a daily basis like I do living with diabetes, I will have to keep it on their radar, educate them, and remind them regularly so that neither of us gets too comfortable with a body that is rapidly changing while pregnant with diabetes.
My advice, to myself and to those out there with T1D who are considering a pregnancy, is to not be afraid to tell people about your needs, your hopes, and your fears relating to your life with diabetes and a baby. You are your best advocate, and communication is key to being successful through this incredible miracle that is a new life.
Ask questions of your healthcare team, your family, and your friends, and refuse to label those questions “stupid” or “redundant.” Seek the information that you need to gain confidence and rest easier. Embrace your inner two-year-old self, and constantly ask, “Why?” Why is that particular test being done? Why is it that some blood sugars are lower in the first trimester? Ask it all. As the person with diabetes, it is your job to be the advocate and understand how you can create the best possible outcome with your entire team of supporters.
Quell the freak outs. Ask the questions. Be that voice that demands an answer, and don’t let your worry get in the way of your dream to be a mother… with diabetes
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