The challenges of pregnancy are daunting on their own, but when you’re diabetic, they can seem insurmountable. That’s one of the reasons Cheryl Alkon wrote a book on the subject. Having type 1 diabetes herself, Alkon knew firsthand the challenges of controlling her disease during pregnancy, and of raising the kids who followed.
Alkon’s book, Balancing Pregnancy with Pre-Existing Diabetes, was published by Demos Health in 2010. It includes the stories of other women who have gone through the experience and focuses on pragmatic, positive solutions.
Alkon is busy these days with her career, raising two children with her husband, and keeping control of her diabetes. Still, she took time out to talk with Diabetes Health about how she came to write her book, her history with diabetes, and her experiences as a parent.
How long have you had diabetes?
I was diagnosed with type 1 at age seven, on August 8, 1977. The years of type 1 have been all right, honestly. Growing up just outside Boston, I always had access to top medical care, at Boston Children’s Hospital when I was first diagnosed and, eventually, at the Joslin Diabetes Center. I have always seen a great endocrinologist every three months or more frequently and have always had pretty good A1Cs.
My day-to-day numbers fluctuate, as they do with type 1, but I am an avid blood sugar tester. I have used a continuous glucose monitor in the past and plan to start up again soon. I am a big believer in the “It’s just a number” mindset when I see highs and lows on my meter. “Test, correct, and move on” is my motto.
A lot has changed during your time with diabetes!
Back in the early days of my diagnosis, there were no portable blood glucose meters, insulin pumps, or even insulins that reacted quickly to what you ate. As a result, I figure I have had many years of not-optimal numbers, day-to-day. Still, nearly 35 years later, I’m still here. My eyes have issues, yes, but I’m on top of them. My vision is good. Nothing is amputated. My kidneys work, and I feel every sensation. I eat fairly well. I react quickly to highs. I do what I can to live healthily each day with diabetes.
You’re the mother of two children. What did you worry and wonder about when you made the decision to have kids?
I did as much research as I could when my husband, Dave, and I first thought about having kids at around age 35, right after we got married. Most of the stuff I heard was negative. When Dave and I went to a preconception counseling appointment with a high risk OB who worked with moms with pre-existing diabetes, all the doctor focused on was the risks: this percentage of babies born to mothers with diabetes will have birth defects, and here’s a list of the potentially terrible things that could happen to you as a pregnant woman with type 1. I left that appointment crying. Dave thought I was being teary about becoming a parent, but I was like “No, that doc freaked me out!”
Before I got married, I had a few friends with type 1 who were having their first babies. So I knew women with type 1 could have healthy babies. But I just wanted a book or resource that showed me it was possible and to hear about what these women ate every day and how they dealt with morning sickness and taking insulin, that sort of thing. So that was the spark that got me interested in writing the kind of book I wrote, because it didn’t exist.
Were you concerned about the hereditary risks?
When our kids were infants, I was committed to feeding them as much breast milk as possible due to the health benefits. When I did feed them formula, I only used a predigested one that is expensive, but has since been linked to lower rates of diagnosis among children born into families with a link to diabetes.
I have heard people argue that since they have diabetes, they wouldn’t want to have their own children because they might be dooming their children to a life with diabetes. First of all, while the chances of having a child develop diabetes are higher for those with diabetes, there’s a big range based on whether you are the mother or father with diabetes, whether you have type 1 or type 2, whether you have other metabolic changes, and so on.
And second, having a child opens you up to the risk of that child potentially developing any kind of illness or chronic condition, as well as the chance that that child might be in a terrible car accident or get injured another way. All of this is to say that having a child means life will happen to that child, which includes great and happy things as well as things like potential chronic illness, car accidents, bullying, or what have you.
What was your experience of pregnancy like?
Pregnancy, for me, was what you had to do to have the children you wanted. It wasn’t a magical or special time. It was filled with many doctor appointments, many blood sugar tests, and constant tweaking of insulin to carb ratios and changing basal rates. I was very pragmatic about it all. Dave came to just about all the appointments and took great notes throughout. The pregnancies themselves were pretty typical: swollen ankles, assorted aches and pains, sleeping discomfort. But thankfully, I never dealt with morning sickness or pre-eclampsia.
Because of my diabetes, though, I had regular ultrasounds with both kids and was thankful that I could see them developing pretty frequently. I am always surprised when I hear that some nondiabetic women only see their babies in utero one or two times. I saw my kids often!
What inspired you to look to other moms with diabetes to write your book?
I began researching the book before I got pregnant with our first child. It took me a long time to get pregnant, and I did a number of rounds of fertility treatments. So while I was reading about pregnancy and trying to determine whether a publisher would be interested in my book, I was also waiting months to actually successfully conceive.
When I finally did get pregnant with our son, I had the book proposal mostly written. This included a sample chapter, in which I definitely included other women’s experiences because at that point, I didn’t have my own anecdotes about being pregnant.
I was also writing anonymously on my blog, “Managing the Sweetness Within” (thesweetnesswithin.blogspot.com), about my efforts to get and stay pregnant. I was building up an audience there, and I was always happy to hear from other women who were encouraging or who told me that they were following my posts eagerly because they were thinking about pregnancy down the road. So including the insights of other women was always a priority, at that point and even now. I certainly didn’t and don’t have all the answers!
By the time our son was six months old, I was eager to get back to working on the book proposal and to send it out. So I finished it before our son turned one. A few months later, I began approaching publishers and agents to see if they’d want to take the project on. Using other women’s voices was a big selling point.
The concept sold to a publisher, Demos Health, when our son was two, and I spent about nine months writing the actual book. It came out in April 2010, and by that point, I was pregnant with our daughter. So I was definitely living what I wrote about.
What were some of the most surprising things that you learned in researching the book?
It’s not really a surprise, but researching and writing a book is a ton of work! I loved it, though, as I really became immersed in the subject and learned things like how different women deal with high blood sugars. One woman told me that she’d exercise in the middle of the night on a home treadmill if she had a high blood sugar at 2:00 AM, and that she tested religiously at that time every night.
What were some of the more unusual things that people told you?
Another woman was a strong advocate of home births and went against medical advice to have her second child at home. I would not recommend this for most women, but I found her story fascinating. The docs who reviewed my book for accuracy before it was published were all appalled, but I felt strongly that I should keep her story in the book as an example of what one type 1 woman did. Personally, I was very happy having two scheduled c-sections in the hospital that I consider my second home.
There’s a lot of variety from one woman with diabetes to another. One woman was committed to removing all preservatives and chemicals from her diet. Another told me how she drank protein shakes, and others mentioned the candy they ate, and bolused for, while pregnant. All of them went on to have healthy babies, so there’s really a range in what women with diabetes can and will do while they are pregnant.
What challenges have you encountered in parenting two kids while managing your diabetes?
Parenting is a constant juggle. I am forever late when going places with both kids because of something. Maybe my pump just beeped because I need to refill it, but I also have to change one kid’s messy diaper and get out the door in time to get the other kid to preschool. Did I pack enough toys to entertain my daughter if I have to bring her along to a doctor’s appointment? Every day brings a challenge of one kind or another. Just refilling a prescription or remembering to throw an extra pack of Lifesavers in my bag adds extra tasks and requires more of my attention. This is in addition to the regular stuff, such as restocking the diaper bag or bringing along healthy snacks and water for the kids so that they have something good to eat when we’re out of the house.
Another component is that I run my own writing business and often juggle deadlines for several projects. Working for myself from home gives me terrific flexibility when it comes to family life, but it’s also a constant hustle to market myself, meet deadlines, manage multiple clients, track down late payments, and all the other stuff that comes with working for yourself.