We had the opportunity to sit down and chat with Kristina and Jonathan, who are expecting their second child, and get their thoughts on what life is like dealing with pregnancy and diabetes. They were able to share with us a lot of insights and advice, and leave us with a much better picture of what pregnancy and diabetes is like for both moms and dads.
Kristina, what are your candid thoughts about having type 1 diabetes and being pregnant? How does your management of type 1 diabetes differ while you are pregnant, versus not?
KRISTINA: First off, being pregnant is hard on its own. Having type 1 diabetes (T1D) is hard on its own. Managing both successfully requires some serious alignment of the stars! Being that this is my second pregnancy with T1D, I have less freak outs over short term high and low blood sugars. I am able to look at and appreciate the bigger picture and know that I am doing my best to keep my baby healthy.
What works one day with diabetes may not work at all the next. That is true on a normal day with diabetes, without being pregnant, but the pregnancy hormones really throw everything for a loop. I’ve found that my continuous glucose monitor (CGM), and being able to see my blood glucose (BG) levels in near real-time, has really helped me to know when to make necessary adjustments to my consistently changing needs.
My diabetes goals during pregnancy are much stricter than they normally would be. The first time someone told me that I needed my BG to be back to 140 mg/dL one hour after eating, I laughed. I thought they were joking. I can say though, it is a whole lot easier to make better decisions and to do things by the book when you have the added responsibility of someone else’s life being directly affected by your choices.
Jonathan, how does type 1 diabetes fit into a typical day for you, as a spouse of a person with T1D?
JONATHAN: Diabetes is a huge part of my day. As soon as Kristina was diagnosed, I knew I was diagnosed as well. It is constantly on my mind. I get up early, and before I go to work each day I check her CGM to ensure there are no corrections that need to be made before she is even awake. If I don’t hear from her in the morning, my first thought is that she has had a low BG and needs help. I have a habit of asking her after breakfast, lunch, and dinner how her numbers have been. Even before bed, I’ll check the CGM to try and get a read on whether or not we have a rough night ahead of us. It is tough to ask and not come across as judgmental, but I ask because I care. I don’t do it because she needs me to, but because I need to, for my own peace of mind. When she is upset, it could be something that I did, or it could be diabetes. It’s a fine line to walk.
How have things changed from that, now that Kristina has the pregnancy on top of having T1D?
JONATHAN: Now that Kristina is pregnant, my awareness has basically doubled. There are two lives now counting on me being observant. With pregnancy comes strict BG goals. Knowing that Kristina holds herself to a high standard with her diabetes, no higher than 140 mg/dL during the day and around 60-70 mg/dL during the night, we don’t have a lot of margin for error. I’m just as involved in her life with diabetes as I ever was, but I’m hyper vigilant knowing that our definition of “well-controlled diabetes” is even narrower than normal during this time period.
Kristina, what worries you the most about type 1 diabetes? Does that change being pregnant with T1D?
KRISTINA: I try not to be a worry wart when it comes to my T1D. I work really hard to make my diabetes management a priority in my life, so I trust that my efforts will pay off. However, the mere presence of T1D is worrisome to any pregnancy. Medical professionals label you as high risk just because of your diagnosis, regardless if you have been able to achieve an “in-range” HbA1c or not. They talk to you differently than a patient without a high risk factor to their pregnancy. So I think whether you have a worry or not, they will plant the worry seed in your head.
Jonathan, what worries you the most about loving someone with type 1 diabetes?
JONATHAN: Diabetes is a tricky disease that has unexplainable ebbs and flows to it. I worry that one day Kristina will be in need of help and I or someone else won’t be there to help her. I think anyone who loves someone with diabetes carries that worry. I have seen this disease take so many young lives of people who seemingly did everything they were supposed to with their diabetes, but it can be unforgiving. I don’t want our lives together shortened because of diabetes. It is really tough to think about living life without Kristina, especially if it were because diabetes took her from me far too early.
That’s a really powerful statement. How have things changed now that you have a baby on the way?
JONATHAN: Having a baby on the way just further adds to the worry. Is the baby going to have low blood sugar issues when it is born? Is Kristina going to have an emergency C-section? Knowing any surgery is dangerous, adding diabetes to it terrifies me. Having a baby adds a million obstacles to any family. Adding diabetes and the myriad of complications that it can bring just adds that much more to the everyday worry.
Okay, taking a break from the baby talk, you have a son already. Does he understand your diabetes?
KRISTINA: I do! He definitely knows I have diabetes, but as a 4 year old, I can’t say that he understands diabetes. Heck, I barely understand diabetes some days.
He knows that he and his dad do not have diabetes, but beyond that he really only knows what he has to know for his own comfort and well-being. He has made comments that suggest he believes that only girls can have diabetes, so I’ve had to correct that. The world is full of misconceptions about diabetes, I don’t want to add to the mix from my own kid.
How have you explained diabetes to him, at such a young age?
KRISTINA: The Dexcom CGM has been a huge educational tool, for both of us. He has learned to recognize numbers by the colors and numbers on my Dexcom screen. Initially, he learned that if the number was yellow, it was too high, and if the number was red, it was too low. Yellow or red numbers meant “Mommy doesn’t feel well” and white numbers meant everything was okay. Once he was comfortable with the colors, we would ask him what the actual number was. Slowly but surely, he learned to read the numbers, and even recognize which way I was trending based on the directional arrow associated with the CGM graph. Today, he is able to pick up my CGM at any time and tell me what it says and have a conceptual idea of what to do based on that information. He is my little safety net. He is great at identifying a low and telling me, “Mom, your diabetes is low…you need some juice!”
What would you advise other parents who struggle to explain their diabetes to their children?
KRISTINA: I try not to overwhelm him with information. He is only 4, so I want him to know that it exists and what to do in case of an emergency where I am unresponsive. But I also want him to be a 4 year old. I think he will learn the true ins and outs over time. He doesn’t even notice my “gadgets.” We call my insulin pump and sensor my “toolkit.” I was volunteering in his class one day and a little boy noticed my OmniPod on my arm. He pointed his finger about one inch away from it and yelled, “WHAT is that?!” My son looked offended for me. He had a look on his face like he couldn’t understand why someone would even ask about it. I told him it was okay and that he could explain it to his friend if he wanted to. He walked up to the boy and said, very matter-of-factly, “That is my mommy’s toolkit for her diabetes.” The kid just shrugged his shoulders and went on about his day, but it made my son feel better that he had given an explanation.
Jonathan, when you found out that Kristina was pregnant the first time, what went through your mind?
JONATHAN: “Wow!” That is the first thing that came to my mind. I was excited and apprehensive at the same time. I had no idea how to be a parent and questioned if I was ready for taking the responsibility of raising a person. I had all of the normal concerns that any first time parent would have, plus the added worry of how diabetes would play into the routines of pregnancy and raising a child.
I remember our first visits to the OB/GYN doctors. It was very demoralizing, because it felt as if they were treating us like the disease was our fault, and we were wrong to be in the situation that we were in, with a child on the way. We were not prepared to “fight the system” during the first pregnancy and advocate for ourselves. I certainly was not ready for tons of high-risk doctor appointments and two sonograms a week in the last trimester, with doctors talking down to us instead of supporting our efforts and guiding us with their expertise. It was very overwhelming, and there was not much community help or diabetes-related pregnancy information to ease my worries. I prepped as much as I could with pregnancy books and talking to friends and family that had children, but nobody could give me the diabetes perspective. Everything I found talked about the doom and gloom of diabetes and pregnancy. Did we make a mistake? Were we going to have that 10-12 pound baby with blood sugar issues at birth? Was Kristina not going to heal correctly because of diabetes and end up with devastating complications? It was terrifying, and the fear was doing nothing to motivate us. It made us feel defeated, and angry.
Over time we grew more confident in what we were doing right and made a conscious decision to not be the victims of diabetes that healthcare was trying to make us believe we were. We got stronger with our patient voices and had a healthy baby boy with no complications. It took a lot of work. At one point we went as far as meeting with the head of the OB/GYN department to voice that our concerns were not being met. We pushed hard for the hospital staff to better explain why they treated diabetes patients a certain way, and what about our actions were demanding that negativity. We demanded to know all of the possible outcomes, and focus on solutions instead of problems. Together, we were the experts of Kristina’s diabetes, and we made sure that they knew we expected nothing less than being included in every decision made in that pregnancy. It was not easy, but we proved to ourselves and our entire healthcare team that it is absolutely possible to have a perfectly healthy baby and labor/delivery process with diabetes.
How do things differ with this pregnancy?
JONATHAN: This pregnancy has not taken the toll that the first one did on my emotional state, but it has been tougher on Kristina’s health, with more sickness and low BG episodes than we ever had with the first pregnancy. Luckily, we have learned how to navigate the diabetes and pregnancy doctor visits. We have no problem voicing our thoughts and we know what we find acceptable and unacceptable about care. Being strong in our convictions about self-management was a huge issue in the first pregnancy and it has not even been fought against by the medical staff this time around. I have more confidence that things will go smoothly and there is no doom and gloom because we will not allow it. We are definitely more prepared for this pregnancy than we were in the first one. We bring up issues and solutions to those issues before the medical staff can make assumptions and fight against it.
Kristina, did you find encouragement or discouragement from your healthcare team, with starting a family and dealing with challenges that come with being pregnant with diabetes, on top of just diabetes alone?
KRISTINA: I’m so glad you asked this! I wasn’t ever met with discouragement when I expressed a desire to start a family, but at the same time no one rolled out the red carpet of family planning for me either. I was encouraged to have my HbA1c under a specific number, but I wasn’t far off from it when I first brought it up so I didn’t stress too much about it. The challenges really came from the OB offices and not any of my diabetes providers. They simply didn’t know enough about life with type 1 diabetes to be the strong supporters that I needed them to be. In my experience, OB providers know pregnancy and babies, and diabetes specialists know diabetes, but it seems rare for the two areas of expertise to intersect for them professionally.
I get really frustrated with some of the questions, comments, and suggestions that get thrown at me from people who are generally unfamiliar with what it is like to live with a chronic disease like diabetes. There is often confusion between being pregnant with type 1 diabetes and gestational diabetes, and that they call for the same strategies of treatment. I can’t imagine how difficult it is for someone with gestational diabetes to figure out everything about diabetes in such a short amount of time while they are pregnant. I’ve had years to figure out my own diabetes, and it’s still a moving target for me!
Life and pregnancy with diabetes is complicated and requires a deeper understanding than many healthcare providers have. That isn’t entirely their fault due to the sheer amount of information overload that we all deal with, but the lack of knowledge doesn’t help me with what I need for my life and pregnancy with diabetes.
I’m often asked very simple questions, but as a person living with diabetes, there are rarely simple answers. “What do you eat for breakfast?” isn’t a fair fill-in-the-blank question, because I don’t eat the same thing every single day. Another unfair question is “What was your blood sugar this morning?” and then judging me harshly and criticizing my diabetes management when it isn’t a perfect 100. I know it is just a blank that has to be filled in my electronic health record, but I see a range of numbers all day, every day. That is life with type 1 diabetes, and shouldn’t be taken as an opportunity to judge me based on one number of the many numbers that I am going to see throughout my day.
There is a clear lack of appreciation of the insane amount of work that it takes to remain on track with T1D. I left one appointment extremely discouraged after my OB looked at some lab work that was taken on a day that I had a pump failure. She was drilling me about how out of control my BG was while I was doing my best to explain that it was a snapshot of a day where a whole lot of things went wrong, and was not an accurate reflection of my average BG levels on a normal day. I had to explain to her that I visited with my diabetes provider that same day to fix the problem, and that my HbA1C was 6.2%. Her response? “Yeah…well…we like for it to be 5.7% or less, so you’re going to need to work on that.”
I nearly lost it.
This lack of empathy, not only from this OB, but from so many members of our healthcare teams, is one of the most frustrating things about working so hard to live with diabetes. It’s thankless, and we get more attention from what we don’t do to take care of ourselves than we do from those things that we do every single day to survive. No one should ever accept a healthcare team’s disregard for the hard work that it takes to live with something as time consuming and exhausting as diabetes.
Jonathan, what advice would you give other spouses and partners who support their significant other with diabetes, pregnant or otherwise?
JONATHAN: It is a hard road to travel. You have taken on a huge responsibility to love and care for someone that has a disease with no cure. There will be great days and there will be terrible days. Understand that diabetes is not your loved one. It is a terrible disease, but for the most part it can be controlled, and it does not have to rule your life.
There will be moments where you will be frustrated and feel like nobody understands the toll diabetes takes on you as the person without diabetes in the relationship. Your spouse might not always understand why you are upset or “over” diabetes, but believe me, they are “over” it too.
I have learned that communication is key. You must advocate for yourself and your partner, both as individuals and as a team. Nobody else will advocate for you if you aren’t willing to put yourself in the mix. Voice your concerns from the beginning and what your expectations are of each other and any medical staff. Being on the same page when it comes to medical treatment makes you an unbreakable team that no medical staff wants to fight, especially if you are informed about your opinions. Have no secrets when it comes to diabetes. Have expectations and solutions readily accessible to each other.
You and Kristina have really embraced the give and take of life with diabetes, and grown from the experience so far. Where do you look for support, in addition to each other?
JONATHAN: I have grown to love the diabetes community. We do not look at this disease as a punishment or misfortune for us. It has provided us with lifelong friends and an opportunity to reach out and help others cope and persevere under the toughest of conditions. Research and advocacy are key in the fight to find a cure, but friendships provide the stability needed to continue this fight. I have learned that giving back to this community has been incredibly rewarding. I have seen people brought to tears when they hear someone else’s low or high blood sugar alarm on their CGM interfering with dinner. Knowing we are not alone in this is priceless.
Kristina, what advice would you give someone with diabetes who is starting to plan for a family?
KRISTINA: First and foremost, make sure that you have a diabetes provider that you get along with. You will have A LOT of communication with them throughout your pregnancy, so having a good rapport is critical to success with less stress. Starting off with a good HbA1C is ideal for both the health of the baby and for your own sanity. When you’re doing everything right by your own diabetes, members of your healthcare team are going to have a lot of trouble giving you grief. Good control is incredibly hard work, but the reward is that it makes everything a whole lot easier with all of the doctor visits and monitoring that has to be done.
What about advice for a mother-to-be who already has a baby on the way?
KRISTINA: If at all possible, get a continuous glucose monitor (CGM). If that isn’t possible, get a prescription for more BG strips, and test, test, test. You would be shocked at how quickly and how frequently your insulin needs change throughout the different stages of pregnancy. For example, toward the end of both of my pregnancies, I have bolused amounts of insulin that on a normal day would probably kill me. Your body does crazy things when you are growing another person, so you have to build that healthcare team that you can trust, and rely on them to guide you through all of these changes.
We can’t leave out the spouses and partners. What insights do you have for them?
KRISTINA: I can’t stress enough that support without judgement is what we need. Pregnancy is such an overwhelming time and we already have SO MANY PEOPLE putting every move we make under a microscope. Most of all, we need someone who is always on our side, who we can vent to, and who will be there at the end of the day to say, “I know this is hard, and you’re doing a great job.”
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