Fortunately, the medical community has shifted in recent years to become more accepting of the fact that type 1 diabetes doesn't have to stop women from having healthy, happy babies. Many women have shared their inspirational stories of becoming T1 moms as well. And now, two of those experienced women are publishing a new "real-world" T1D pregnancy guide, just published in March 2017.
We're happy to turn over the mic today to our social media coordinator and correspondent Rachel Kerstetter, who interviewed the authors -- our friends and Diabetes Online Community (DOC) advocate Ginger Vieira and PWD and Certified Diabetes Educator Jenny Smith.
Be sure to read through to the end, for your chance to win a free copy of this new book!
Chatting with New T1D Pregnancy Guide Authors, by Rachel Kerstetter
Shortly after I was diagnosed with type 1, I was at a girls' movie night and one of the movie options was Steel Magnolias. “Rachel, we might not want to watch this one,” my friend said. When I asked why not, she confessed that she was afraid it would scare me with the way it portrayed pregnancy and type 1 diabetes. We watched it anyway and yes, it scared me.
However, it is completely possible to have a successful pregnancy and a healthy baby if you have type 1 diabetes.
The new, self-published book, Pregnancy with Type 1 Diabetes, is a month-by-month guide to a T1D pregnancy journey by Ginger Vieira and CDE Jennifer Smith.
Ginger is an author, writer and health coach who has lived with type 1 diabetes and celiac disease since 1999, and diagnosed with fibromyalgia in 2014. You may be familiar with her other books "Dealing with Diabetes Burnout," "Emotional Eating with Diabetes" and "Your Diabetes Science Experiment."
Jenny is a CDE and Registered Dietician who has lived with type 1 diabetes since 1990. She works via Skype with patients across the globe on diabetes management goals including: managing blood sugars during pregnancy, marathon and triathlon training, general diabetes management, weight loss and nutrition goals, and training on using your insulin pump and continuous glucose monitor.
And if they weren’t already qualified enough, both women have had successful pregnancies that they discuss in the book. I had the opportunity to learn more about the book, their efforts to dispel T1 pregnancy myths and the journey into self publishing.
Here’s what they had to say:
DM) What was your motivation for creating this book?
Ginger) It didn't exist yet! And women with type 1 diabetes deserve a book... a guide... that is specifically designed to support them through the experience of pregnancy. There are some great books out there for women with diabetes in general, but not specifically type 1 diabetes, and the challenges we face with type 1 are so specific and detailed and complex compared to generalized diabetes during pregnancy.
Jenny) Working with women through pregnancy I found a major lack in resources. Specifically, resources that were written for the non-medical community -- information for the woman with type 1 to refer to for "why" something might be happening, when to expect changes, how much of a change to expect, etc. There are great books that are more general, but nothing that is specific to pre-pregnancy, during pregnancy and postpartum -- nothing that gave info about nutrition and exercise and dosing adjustments, etc.
What makes your book different from others? What are the unique benefits from reading this book?
Ginger) This book is truly designed to be a one-stop-shop for your blood sugar management needs from before you even get pregnant, through each month of pregnancy, delivery and postpartum with breastfeeding, etc. There is no other book that teaches readers how to manage diabetes for the sake of preparing for pregnancy and then outlines how to manage your blood sugars, insulin, nutrition and exercise throughout each month of pregnancy. There are actually eight chapters in the beginning of this book that teach straight-forward type 1 diabetes management because we wanted to make sure the reader has all the essential tools and knowledge once they are pregnant. You can't assume that everyone starts their pregnancy already knowing what an insulin-to-carbohydrate ratio is or how to study their own basal insulin doses.
Jenny) The book teaches self-assessment tools that unfortunately many have not been taught by their care team, even before pregnancy. How do you navigate all the adjustments in pregnancy and after if you don't know how things are working before you get pregnant? The unique benefit to this book is that if you start to use it before pregnancy, you'll have a better understanding of how to adjust and how to evaluate changes through pregnancy. You'll also feel less at the mercy of doctors to make adjustments (while they may be helpful and your care team may be fantastic, they don't know the ins-and -outs of your daily life with diabetes).
If everyone's insulin needs during pregnancy are so individual, how can the book address that?
Ginger) We teach you how to assess your own insulin doses -- whether they need to be decreased or increased -- and then what to expect in terms of general insulin dose adjustments that most type 1 women will experience at specific points of pregnancy. For example, each month of pregnancy, most women can expect to see certain increases or decreases in their insulin doses, and we outline exactly when and why those expected adjustments will need to be made for the sake of maintaining the healthiest blood sugar levels for you and baby.
Jenny) It helps to work with a CDE who "gets it" through your pregnancy. While the book is a good resource for when/why/where to adjust, it is always important to have a second set of eyes to evaluate and help you optimize your management. No one can do it all alone.
When in a woman’s T1 pregnancy journey is the ideal time to pick up this book?
Ginger) At least 6 months BEFORE you start trying to become pregnant! Your blood sugars during that 6-month period prior to becoming pregnant actually impact your baby's development right from the start, so the sooner you're able to start studying your blood sugars and focusing on achieving the right A1C for you during your pregnancy, the better. Certainly, not all pregnancies are planned -- life happens!
Jenny) Agreed. The optimal time would be 3-6 months prior to conception or prior to starting to try to conceive. You can look at your own management and determine if you have things pretty stable, then perhaps just a refresher on pre-pregnancy would be good to start with it at about the three-month mark before trying. If you have roller coaster management, then it would be good to use the book and start learning to make adjustments 6-12 months before you start trying. The time frame before will give you optimal time to feel confident and bring target levels down into the range you'll want them in at the start of pregnancy.
You mentioned that publishers said the audience for this book was too narrow. Can you tell us more about that roadblock and how you decided to launch a Kickstarter campaign?
Ginger) It wasn't that long ago that women with type 1 diabetes were told they shouldn't pursue pregnancy. Fortunately, with the creation of better insulin pumps and CGMs, more and more women with type 1 diabetes know they can experience a healthy pregnancy and create a healthy baby. But that doesn't change the fact that this is still a small audience: women, with type 1 diabetes, who want to pursue pregnancy. Compared to a book designed for women with type 1 AND type 2 diabetes, that's a pretty darn tiny audience!
Self-publishing a book can be done on a very tight budget, but being able to raise the $3,000 we would need to pay a graphic designer and printing costs to send books for marketing is extremely helpful. I don't write a book to make money -- because when you self-publish, you're really writing a book for free and then making a little bit of money spread over many years. Jenny and I wrote this book because there are people who really need it and really deserve it.
What were the community reactions to the Kickstarter campaign like?
Ginger) Wonderfully supportive! We raised our $3,000 within the first few weeks, especially thanks to some big donations from two gentleman whom I'm sure would rather keep their names anonymous.. and about 45 other incredibly generous people who donated to help us reach our goal! I was truly surprised at how quickly the diabetes community stepped in to help us reach our goal.
Jenny) Yes, fantastic response! We can't thank the community enough for the help in getting us started and getting this book published for those who need it!
OK, this one is for Jenny: As a "pregnancy coach" working alongside Gary Scheiner at Integrated Diabetes Services, can you talk about how you work with your clients? And how is that integrated into the book?
Jenny) We work with our clients in a very in-depth way to get people information so they can successfully manage and make adjustments. When we work with a client through pregnancy it is even more in-depth. We have monthly phone visits to discuss all the things that will be expected to happen each month through pregnancy. We help women navigate discussions with their OB/GYN, high risk team, and we follow up via email and text at least once per week to assist with adjusting insulin doses based on data (pump/CGM and glucose logs are expected at least once a week from women). In the book we have tried to bring this education into written form. But again, it is still important to have someone to work with (especially if it is your first pregnancy) to help you navigate the changes and be a second pair of eyes for data -- a sounding board to help you learn how and why to adjust at certain times, etc.
What aspects of your own successful T1 pregnancies would you like to share with T1 women considering pregnancy?
Jenny) I actually like to use a quote that helped me remember that I was able to have a successful pregnancy and baby. It's from Winnie the Pooh actually: Christopher Robin says to him, "Promise me you'll always remember: you're braver than you believe, and stronger than you seem, and smarter than you think." I personally think everyone living with diabetes is a superhero of sorts. When you add in pregnancy, you have to remember you are doing something amazing, a miracle of the woman's body. To do this with diabetes, you have to believe you'll be successful, there is no perfect, but diabetes already teaches us we can handle more than the general public without D. Pregnancy with diabetes is a labor of love. Love for yourself and for the baby you carry.
Ginger) I actually included journal entries of each week of my first pregnancy in the book so readers could see what kinds of challenges I faced and how I worked through different insulin dosing questions, etc. I'm now about 8.5 months pregnant with baby No. 2 and while the diabetes management part has been "easier" because I knew what to expect, the pregnancy itself has been more stressful in other ways because I have a toddler to chase after all day this time.
Ginger, considering that you live with celiac and fibromyalgia as well as T1, is there any specific advice you would offer to other women living with multiple chronic conditions who want to pursue pregnancy?
Ginger) For me in this second pregnancy, I knew from the very start that I would not be putting as much pressure on myself to achieve an A1C much below 5.7 percent. It was about being very specific with myself in terms of what degree of stress and work I could endure while already being a full-time mom to a toddler. I check my blood sugar a lot (thanks to unlimited test-strips from One Drop's cool program!) but I actually took my Dexcom off early on in the pregnancy because it was making me anxious...l ike "Ahhh, the arrow is going up even though I'm at 100 mg/dL... maybe I should take more insulin now because in 10 minutes I'll be in the driveway with my toddler on a bicycle!" Taking the CGM off actually allowed me to just use the good old-fashioned logic that I've used to maintain an A1C around 5.7 to 6.0 when I'm not pregnant.
For my fibromyalgia, I have suddenly hit a "physical stress point" in the end of this pregnancy that has triggered my severe chronic fatigue (an aspect of fibro) that comes with a layer of cloudy depression that has been really challenging. I have 2.5 weeks left but every hour is now feeling like an uphill battle, trying to stay positive and move my body forward to take care of my family. The relief will come when she is born, and I'll be talking myself through each hour of the day until that moment arrives.
What are some of the primary concerns that T1 women have about achieving a successful pregnancy?
Jenny) Primary concerns are many. Some worry about birth defects, or a big baby and complications in delivery. Others worry about their own health and changes in their body -- eyes, kidneys, etc. Pregnancy is a type of stress on the body, even without diabetes, so it is understandable to be concerned about how it could affect health (baby and mother). Another concern is BG management. The targets are tight in pregnancy, and many worry that it won't be possible to keep such tight control for 9+ months -- believe me, it is an effort, but it can be done, especially with a team that helps.
What do you believe are the best ways to break out of the old mindset that women with type 1 shouldn’t pursue pregnancy?
Ginger) By reading stories and blogs of other women who have done it! Honestly, that's what helped me go from "Oh my gosh, I shouldn't be pregnant, that's too much stress on my body and for the baby!" to "Wow, I can absolutely do this, let's go!" And for the record, you don't have to have fancy technology. I chose to continue on MDI (injections) during both pregnancies and kept my A1C under 6.0 percent.
Jenny) I agree… if you have an adult type 1 support group in your area (JDRF has them in a lot of major cities) see if there are women in the group who would talk. Blogs and chats and Facebook groups can also be a good place to see how successful you can be in pregnancy. Also, have a good care team that supports you; they should be able to talk openly with you about how they will help you stay healthy. If you have any other medical conditions, have a discussion with your care team about how a pregnancy may impact these so you are well informed from the start.
Do you have any personal triumphs as T1 moms yourselves to share with our readers?
Ginger) Personally, I'm very proud of myself for maintaining an A1C around 6.0 after my first kiddo was born. And I credit that to what learned during my pregnancy and from Jenny about the basics of tighter blood sugar management. It just became my new normal. I don't obsess about my blood sugars or do anything wildly crazy beyond the basics of counting carbs, eating a diet that is at least 80% very healthy choices (sometimes low-carb, sometimes not), taking my insulin (I use syringes) and checking my blood sugar often. The biggest difference between when my A1C was up in the higher 6s prior to pregnancy/motherhood was that I just accepted 160 mg/dL as a "normal" blood sugar. Now I see that as a high blood sugar and I adjust my insulin doses so my new normal is 100 mg/dL.
Jenny) I feel like my personal triumph, after having two successful and healthy pregnancies and two healthy little boys, is remembering to take care of myself. If I am healthy, they will get the best of me that I can offer and I'll be able to enjoy their life and guide them. I've made time for myself, mostly in the form of exercise so I can maintain the level of BG management I aimed for in pregnancy. Not every day is perfect, life happens, but I get back to my target instead of just letting it slide. And letting things slide post-baby can be easy. You have a new little person to care for and they are as needy as diabetes can be… so remembering to do things for you that optimize management will make it a bit easier overall.
It’s clear that Ginger and Jenny saw a need within our Diabetes Community and filled it with this new guide. And since my conversation with them, Ginger gave birth to her second daughter, Violet. Congratulations to Ginger, her husband and the new big sister on the newest addition to your family!
"Pregnancy with Type 1 Diabetes" is available on Amazon in paperback for $11.99, but before you go buy it, read on for your chance to win a free copy for yourself...
A DMProducts Giveaway
Just leave a comment below, and be sure to include the codeword "DMBooks" somewhere in your comment so we know you're in it to win it. Since our comment system requires log-in, you may also email us your entry directly at firstname.lastname@example.org with the subject header "T1 Pregnancy."
You have until Friday, June 23, 2017, at 9pm PST to enter.
Please be sure to monitor your Facebook messages or email, as that's how we contact our winners.
Good luck, T1D Ladies!