Cheryl Alkon, journalist and D-blogger at Managing the Sweetness Within (pictured right) has written the book that many a would-be-mom with diabetes has been waiting for: an 'insider's guide' to having a baby with this illness. Titled Balancing Pregnancy with Pre-existing Diabetes, it covers the whole pregnancy experience, from the months before you begin trying for a baby, through conception, all three trimesters, labor and postpartum.
Having already had my three wonderful babies before my diagnosis (and not planning to make anymore), I decided this book review was best left to someone personally effected. Therefore, please enjoy today's review/interview from my advocate friend and intermittent correspondent, Allison Blass.
A Guest Report by Allison Blass
Now that I am in my mid-20s, I've become more and more aware of starting a family. Making sure I have a good job, living in a good neighborhood, paying attention to what people say about schools... it's all very grown-up. But as a type 1 diabetic, having children has an extra layer of complication, and I'm thinking about pregnancy even before I'm engaged. So I was so excited to find out about (and be able to review) Cheryl's new book.
I found the book informative and thorough, while remaining friendly and easy-to-read. She offers testimonials from dozens of "experts" — type 1 moms who have been there! — including a few D-OC favorites like Kerri Sparling, Michelle Kowalski and Kassie Gregario Palmer (who wrote the book on being a parent with type 1 diabetes). She covers everything from how to find the right doctor to how to get your A1C into Baby Range, all the way to how to put together a birth plan that you'll be comfortable with. This is definitely a book that I will be reading and re-reading side-by-side with What to Expect When You're Expecting...
Cheryl was also kind enough to answer a few questions:
AB) It's every blogger's dream to write a book, no? How did you go about getting this book deal?
CA) I began blogging specifically to develop a platform for a potential book on pregnancy and diabetes. I've always worked in journalism, and I'd thought about writing books long before I began blogging back in 2005. Around that time, I was newly married, an old lady of 35, and knew that I'd have to work on having kids sooner rather than later because of my age. I soon realized that if I wanted an insider's guide to diabetes and pregnancy, I would need to write it myself. I figured if I could develop an established readership with a blog about diabetes and pregnancy, I could show that there was a potential audience. This would be a strong selling point for an agent or publisher.
Once the proposal was in top shape, I contacted an editor I knew who worked for a company that published a lot of diabetes titles. He was interested in seeing the proposal, but I didn't hear back from him after about two months. A friend told me I should consider looking for a literary agent at that point. I got a terrific list of potential agents from Melissa Ford of Stirrup Queens, who was trying to sell her own project. I researched to see if they covered women's health or diabetes topics, and then sent out about query letters. Many agents, including the editor of the diabetes books who finally got back to me, said it was a great proposal, but that the topic was too small for them to take on. They didn't think it would sell enough copies to make any money on it. Others were intrigued — I ultimately got to pick my agent from about five who were interested. I picked Molly Lyons at Joelle Delbourgo and Associates because she didn't want me to significantly change the scope of the book, she seemed genuinely interested in the project, and she had a great reputation.
I signed with Molly in fall 2008 and the economy was tanking. She waited until after the new year to send the book out to about 20 publishers. Once again, I heard the same concerns: the book wouldn't sell to enough people, and how would it make money for a publisher? More academic publishers were concerned that my tone wasn't formal enough. I eventually signed with Noreen Henson of Demos Medical Publishing in February 2009, and spent most of that year writing the book itself. The book came out this month, so it's taken five years from initial concept to finished product!
To be specific, mine is the first full-length book in the US that is an insider's guide to the subject. There are several titles written by medical professionals (just type in "diabetes" and "pregnancy" in Amazon and you'll see what comes up). A great book about parenting with diabetes came out in 2006 while I was in the midst of working on my proposal, and the book covers pregnancy in part. There is also an out-of-print book published in Australia that was co-written by a type 1 woman and a doctor, but it was tough to track down, pricey, and pretty clinical.
As mentioned, this book wasn't out there because few publishers thought it would sell enough copies to make any money. I had to be very specific in my proposal about how many women in the US and worldwide had diabetes that were potentially pregnant in a year. To increase potential sales, I eventually included type 2 women in my book too. (The original proposal was for type 1 women only). These numbers of annual diabetic pregnancies aren't tracked anywhere (I contacted a lot of diabetes associations, groups, and researchers around the world to try to pin down the numbers, and got several estimates). But showing that I had readers on my blog who were hungry for the information was helpful in proving this was something that women really wanted and wished was available.
You wrote this book mostly after you had your baby. What were some things you learned that you wished you had known during your own pregnancy and birth process?
Honestly, I knew a lot about pregnancy with diabetes going into it because I'd been researching the subject for awhile, plus I had fantastic doctors. I would tell anyone that high blood sugars happen — we're all living with diabetes, and that comes with the territory. Do what you can to get your sugars into the recommended ranges — use a pump, a CGM (continuous glucose monitor), eat right, exercise if you can, and stay on top of all the medical appointments. Even if you conceive with out-of-range blood sugars, you aren't guaranteed to have a baby with health problems. The risks are higher, but they aren't guaranteed. And of course, work as hard as you can to get your A1c down as soon as you find out that you're pregnant.
I also stressed out about formula-feeding our son once he arrived — the link between formula based on cow's milk has had a potential link to type 1 diabetes development. For whatever reason, I had major breast milk supply issues, so I couldn't feed my son breast milk alone. I've since talked to the researcher studying this very question (his quotes are in my book — see chapter 8!), and he confirmed what I suspected — predigested formula is most likely a better choice for a baby potentially predisposed to type 1 diabetes than a standard formula. The idea is that cow's proteins may somehow cause a reaction that might lead to type 1, but the pre-digested formula breaks down the cow's milk proteins to levels that won't irritate the baby's digestive system, and are therefore believed not to cause that reaction.
I'm in my mid-20's and, while having a baby is not quite on the forefront of my mind, how early do you think it makes sense to start preparing for pregnancy? How far in advance did you start?
In my mid-20s, having children was nowhere on my radar. I was far more into my career and didn't want to get married until I was at least 30. Once I turned 30, though, I knew that it was tougher to conceive (fertility rates start declining for women at 27), and that I had to think seriously about finding "Mr. Cheryl Alkon" and having a family together. I met my husband, David, when I was 32, and we got married when we were both 34. Once I hit 35 in 2005, I was like, "let's go."
It's suggested that you talk to your endocrinologist and meet with a high-risk obstetrician or maternal-fetal medicine specialist about 6-12 months before you want to start trying to conceive. This is so you are fully aware of what it takes to get and stay pregnant with type 1 or type 2, and to get your A1cs into the recommended range before getting pregnant. Some doctors say an A1c under 7.0 is fine, while others recommend being under 6.5 or even under 6.0.
Thankfully, my A1cs have always been in a good range, in the sixes, well before I was pregnant. This is because I spent a lot of time over the years thinking about food, how it affected my blood sugars, and exercising. I went on an insulin pump at age 30, and I typically test my blood sugar many times a day anyway. I'm now also on a CGM and rely on it a lot.
What did your husband do to help with your diabetes before and/or during your pregnancy? In other words — any tips for the partners of moms-to-be?
When we first started dating, I got Dave the book The Family and Friends Guide to Diabetes, and he read that so he'd know what he was getting into being in a relationship with a woman with diabetes. Before pregnancy, Dave wondered why I spent so much time online reading email newsletters and blogs about diabetes. He makes fun of me all the time, even today, actually, and wonders if we people with diabetes speak in some kind of secret word jumble code to each other. "Do you talk about your TERMES (word jumble for blood glucose METERS) together?" he asks. Even without a TERME of his own, Dave still came with me to every pre-conception doctors' appointment and would take detailed notes about what the doctor said about diabetes or blood sugar control or whatever. (In this respect, we are both fantastically type A).
However, I actually cried at the first appointment we had with the obstetrician. This doctor, like many, really stressed the risks of pregnancy with diabetes, all the terrible things that could happen, and I left the appointment quite discouraged. But Dave told me he'd do whatever he could to support me while trying to get pregnant, and has been very helpful. I am pretty independent when it comes to diabetes management, but Dave will get out of a warm bed to go grab me some juice if my blood sugar is dropping in the middle of the night and I haven't restocked my night-table with a quick sugar stash.
In terms of tips, I'd say: talk to your partner about what you need from them. I have a friend whose husband inserted her infusion sets while she was pregnant because she was too uncomfortable to do it herself at the end. This isn't something I'd ask someone to do for me (especially since Dave is not a fan of needles), but it's great when Dave brings me the juice boxes at 2am. Let your partner know what you need, and why it helps you out.
We PWDs are used to controlling our BG management ourselves. How much say did you actually have when you were pregnant? What about when you were in the hospital?
Diabetes management is always about control, and while I was pregnant, it was the same thing. I worked closely with my endocrinologist and high risk OB and pretty much agreed with them when they suggested insulin adjustments or other changes. While in the hospital delivering, I did go off my pump and went on an insulin drip, which was the protocol for where I gave birth. Some people have a hard time with this and insist on keeping their pumps on, but an insulin drip works faster than a pump can. As long as I could see that a drip was working right, by regularly checking my own blood sugars throughout the process, giving up my pump for a drip didn't seem like a bad thing to me.
How does the postpartum period affect diabetes? I always imagine that once you've spent 9 months managing your diabetes so intensively, it would be easier to keep some of those habits up. Any truth to that?
Conversely, I found with the women I interviewed, as well as for myself, it's a real pleasure to stop freaking out every time the TERME reading went above 140 mg/dl. Managing the tight sugars that are recommended during pregnancy is pretty tough, and for me, dealing with the many accompanying low blood sugars, frankly, sucked. At the same time, highs suck, too. I ate a corn muffin the morning after I delivered. To me, eating a corn muffin is like eating a huge slice of cake, and after many months of pregnancy and tight sugars, I just wanted a little sweetness without worrying about my son being born with three heads. But my blood sugars that day were well into the 300s, something I remember to this day because they hadn't been so high for so long.
Immediate postpartum brings with it a lot of sleepless nights, and hello! a whole other person to care for. It can be easy to forget to test a blood sugar before a meal if you don't even know when you'll get to eat because someone needs a diaper change, and then a feeding, and then to be burped, and then to be changed after spitting up all over the cute outfit.
But numbers within non-diabetic ranges help you feel better, and, according to one researcher I talked to for the book, help normalize the flavor of breast milk so that a newborn is less fussy. For me, just trying to stay under 200 mg/dl in the early days and weeks of motherhood was my goal.
In addition to diabetes, you also struggled with (in)fertility issues. Any plans for a Baby L #2?
I think it's fair to say that, after dealing with the rigors of infertility, no one can predict the future. If I have any news on that, I promise I'll post it on my blog, Managing the Sweetness Within.
Thank you, Allison and Cheryl, for a frank conversation on a difficult subject (I should know; I found all three births difficult even without the diabetes :o )