Melissa Lee, respected and outspoken patient advocate, has been living with type-1 diabetes for over 25 years. As an advocate, her mission is to bring patients into dialogue with other stakeholders in the diabetes space. She has spoken on behalf of patients with government, payer, industry, regulatory, and health care provider groups. She writes at her own fantastic diabetes blog called SweetlyVoiced.com and for the popular diabetes website, ASweetLife.com. In the following interview, Melissa Lee answers questions relating to her experience with pregnancy and diabetes. Lee has had two beautiful children and shares some words of wisdom for current and future mothers. Enjoy!
Q1. How would you describe your pregnancy/pregnancies as a woman with diabetes?
My two pregnancies each felt very different, which taught me that it's true when they say that you can't really compare pregnancies. Regardless of how many times you experience a pregnancy with pre-existing diabetes though, you have some of the same what-ifs and worries - whether you're the type to pre-occupy yourself with those worries ordinarily or not, I think. If you're receiving great prenatal care, you're fussed over and you get either inklings or outright horror stories of what your team has seen go wrong. And if you're not receiving great prenatal care, you're worried without the reassurance of those regular check-ins and extra sonograms, etc. Each blood sugar value on the meter carries this extra weight (no pun intended) than it already did because you're thinking about how it affects the life inside you. I was very confident and felt very well-cared for during my pregnancies. My first pregnancy was pretty low-key and comfortable with no major concerns beyond T1D. It was reached after struggles with infertility, so it was a relief to be pregnant, too. My second was more uncomfortable physically, more concerns about my child's growth rate, with various little hiccups like pump site staph infections, etc, and the fact that I was chasing my toddler through the whole experience. :)
Q2. Were there any challenges you faced that you expect other women with diabetes might encounter during their pregnancies?
I think, here in the U.S., one of the big challenges all women with diabetes could encounter is the cost of managing a high risk pregnancy. There was time lost from work, there were extra visits to the usual providers (ophthalmologists, endocrinologists, CDEs) and extra providers on top of those (obstetricians, perinatologists, MFM doctors, fertility specialists). I think with my first, which like I said was fairly easy, I went to 51 appointments in 38 weeks. With my second, I lost count.
It's hard to claim with any pregnancy that there are universal challenges. I had been told that I would have "pregnancy lows" and be low all the time in the first trimester. I understand that this is very common. But I didn't experience it either time. I was high almost right out of the gate and my insulin needs just went up and up and up. Insulin needs do very during pregnancy and they do usually rise after week 20 when the placenta begins to kick out human placental lactogen (an insulin resistance hormone). It's not uncommon to be at 300 or 400% of your pre-pregnancy insulin needs by the end of your pregnancy. My insulin-to-carb ratio was down to 1 unit for every 3 grams. I joked that I could look at a potato chip and have to bolus. I needed 10u for a cup of coffee! One of my challenges was allowing my brain to be okay with large doses of insulin, even more than my max dose my pump would allow, in order to manage eating and still keep my numbers in range.
Q3. If you were to suggest three tips to women with diabetes who are planning to get pregnant, what would they be?
First, with all of this emphasis on getting your A1c in range before pregnancy, it's critical to understand that the baby cares about what your BG is from the moment of conception, not the weeks before. The reason that our medical teams want our A1cs in a target range before we plan for kids is (a) so that good management principles and practices are in place so that, in the words of my CDE, "all you add is the baby" and (b) because the first 8 weeks of a pregnancy are so susceptible to blood sugar-related brain and early organ development problems during the time it's least likely a woman is aware that she is pregnant, so pregnancy should, whenever possible, be something we take precautions to prevent when we aren't in a position to manage our BGs as carefully and that we are ready to tackle as soon as we are actively planning for pregnancy. Our healthcare teams are trying to mitigate risk. Active pre-pregnancy planning prevents a lot of things from going wrong, BUT an A1c that's out of range because of a bad BG run the month before there was an embryo does not mean that there necessarily will be problems. From the moment a woman learns she is pregnant, she should snap her management into gear, but it's too easy for women to lose focus on when and how the A1c matters to their pregnancies. It's easy to be scared.
Secondly, I would suggest that you find a community or women - online or off - who have been through pregnancy with pre-existing diabetes before. I was pregnant at the same time as many of my friends who don't live with diabetes. While many, if not most, woman worry about our growing babies and the weird pregnancy symptoms nobody tells you about, women without diabetes don't understand or can't relate to the "extras" we get to enjoy - the extra worry, the extra challenges, the extra time off from work and regular activities to take care of the dozens of extra appointments. One extra I DID enjoy, however, were all the extra ultrasounds. I saw each of my babies an average of 22 times where most of my friends got 1 or 2 sonograms. I knew their little profiles before I knew the feel of their skin or the smell of their hair.
Third, don't freak out about the outlier blood glucose levels. It's easy to guilt yourself into a frenzy because of an injection that didn't bring you down like you thought it would, or the fact that your insulin needs are skyrocketing and it takes large doses to cover even looking at food. What matters to you and your baby is that you're actively checking, actively working on bringing those outliers into range, actively changing your dosing needs as your body changes. Yes, it's a 300 mg/dL reading on the meter. What matters is what you do next. As one of my CDEs once said, "you still have diabetes."
Q4. What are you most proud of in terms of diabetes self-management during the times you were pregnant?
I am most proud of my confidence, I think. I assembled a great support team and tried to take the hiccups in stride. I waited to get pregnant until my A1c was where I wanted it to be and I had very tight control the first time and reasonably tight control the second. I'm also proud that I was able to keep my management tight between pregnancies so that I could get pregnant again quickly. Not everybody can, not everybody wants to, and that's okay. Many women struggle postpartum to keep up that level of micromanagement (if they want to) and necessarily need a break from the emotional rigors of tight control, but I knew I wanted my kids fairly close together and I was able to make tight management a new way of living without it burning me out too badly.
Q5. If you could go back in time to before you ever got pregnant and tell yourself something about the experiences, what would it be? OR Is there a mantra that would've benefited you?
I think I would have warned myself that I would have to be my own advocate - and that in doing so, it would be the first of ten thousand times I would be an advocate for my children. Whether it's advocating for the time you need, the care you need, the reimbursement you need (my insurer tried to drop me during my first pregnancy), or the help you need before and after the baby comes (I needed a lot of help with breastfeeding and swear by the lactation consultant who got me off to a great start with both of my kids), you're going to find the strength to take a stand and speak up for what you and your child and your family need to be happy, safe, and healthy.