Prenatal Genetic Testing: There's a lot ot say.

I put off writing this post for quite sometime because of one of the most scary parts of prenatal genetic testing: the false positive.

My doctor advised, and I wanted to have a first round of non-invasive genetic testing. We had a sequential scan. This involved an ultrasound at 11 weeks to measure the baby's nuchal fold (the skin covering the back of the a baby's neck) and a blood test, followed by another blood test at 18 weeks.

The sequential scan looks at the nuchal fold measurement and four hormone and chemical markers in your blood to help pin down the risk a baby might have Down Syndrome (three copies of chromosome 21) Trisomy 18 (again, an extra copy of chromosome 18), a neural tube defect (like spinal bifida) or a congenital heart defect. This gives more information about risks that maternal age alone.

Every pregnant woman has the opportunity to have these tests done. Diabetic women may be counseled more strongly to have the tests because their risk of neural tube and congenital heart defects are already higher.

But, it's important to remember that the tests are completely your choice. If you know that a result will not change how you feel or what you do with a pregnancy, than by all means forgo the testing.

The second blood draw showed higher levels of a hormone called alpha-fetoprotein. This is an indicator of an increased risk of a neural tube defect. The increase was not high, so my risk for having a baby with a problem changed from 1 out of 150 to 1 out of 140 with the result... not too substantial, but definitely worth some tears.

The high AFP value could also indicate a variety of other situations. They ranged from, in the best case, a baby whose growth was a bit stunted, to, in the worst case, a pregnancy had that ended. Interestingly AFP is also a marker for some cancers.

Needless to say getting the call from the genetic councilor was terrifying, and the two week wait until the ultrasound was tense. My doctor reminded me that 1 out of 140 means that 139 babies are just perfect.

The ultrasound went better than well. We got to see the baby's spine and brain. I've never seen anything more lovely. The weird alpha-fetoprotein reading was an anomaly. The baby is growing well.

I have mixed feelings about the genetic screening process. I learned more information about my child's risk of some conditions, but was worried about another, unnecessarily. However, I think, given the increased concern with diabetic pregnancies, I gained some valuable information and I will likely go for it again if I decide to have another child.

Weight Gain

'Ten to fifteen pounds.' The doctor looked me straight in the eye and told me I should gain between ten and fifteen pounds. At my second appointment, I was already up five thanks to some Chinese food indiscretion and a heavy coat.

Surely she was joking. I later told my friend that 10 pounds was the equivalent of a 'bad vacation' and that it was likely my baby alone could weigh that much. However, at my next appointment, the doctor reassured me... they were dead serious.

Your pregnancy weight gain goals are determined by your pre-pregnancy body weight via your Body Mass Index. Here is some great information from the Mayo Clinic.

Gone are the days of eating for two. Exercise up to delivery and healthy eating are now expected parts of pregnancy. Know this, your health care provider will hold you accountable.

This is especially true for women with prior heath conditions. Have high cholesterol? Too much weight gain makes it harder to control. The same goes for high blood pressure and for diabetes. Increased body fat will exacerbate the insulin resistance all pregnant diabetic women cope with. Additionally, too much weight gain can lead to more difficult deliveries and make it harder to induce labor.

At 20 weeks, I've been able maintain my weight after the initial gain, I think largely because I continue to exercise regularly and didn't go crazy with dietary changes... by that I mean I have ice cream every OTHER day.

Scientists would say that I had already laid down the maternal fat stores needed during pregnancy (I am ALWAYS planning ahead), and so didn't need to gain fat like moms who start out at a normal weight.

Either way, it's easy to worry about too much or too little pregnancy weight gain. I frankly didn't believe I would gain any weight if I didn't change my eating habits... but the baby had other plans.

Second trimester: Insulin don't fail me now.

In one of many jokes of the diabetic pregnancy, just as you've become used to the lower insulin needs and increased sensitivity of the late first-early second trimester, your placenta throws you for a loop.

The placenta, masterful organ that it is, has one keen interest... keeping your baby well fed. It releases a hormone cocktail with many baby-promotiing properties, one of which is counteracting mom's insulin to keep more sugar circulating in the blood and consequently more available food for baby.

In non-diabetic moms, the pancreas pumps out more insulin to compensate. For some non-diabetic women, the placental hormones are too much for the pancreas to handle, causing a condition known as gestational diabetes. This is a temporary form of diabetes that goes away after delivery.

For those moms that are already diabetic, the 2nd trimester means you'll be taking more insulin, potentially LOTS of it. My doctors told me to expect to take double my pre-pregnancy insulin or more by the time pregnancy-induced insulin resistance peeks in the third trimester.

Currently, I've had to do one big bump at about 18 weeks. I changed my insulin to carb ratio from 1 unit to 7 grams to 1 unit to 4 grams (at breakfast) and 5 grams (rest of the day). I've also upped some of my morning basal rates. Now, because I'm taking so much more insulin, I'm changing my pump sites out once every two days instead of three. My insurance company understands at the moment, but I may switch back to plain old needles for some meal boluses to save costs.

I'd suggest not waiting too long to talk with the docs about changing your levels. You know it's coming, as do they. I found that making smaller changes more frequently is less traumatic then going for the big jumps, or seeing 200s and higher regularly.

Plan your celebration strategy.

I love Thanksgiving. I have great memories of the days of preparation and celebration that started with shelling pecans with my Great Aunt Leta for the cranberries and pie and culminated in hours of eating, when many a male member of my family headed back to the buffet for third and forth helpings.

But, things are a bit different now. Almost no body ends up with thirds on their plate. And for those of us with dietary concerns or diet-related health issues, enjoying the gluttony is a bit more complicated than a food coma. While pre-pregnancy, I would be fine with hitting a blood sugar of 300 on Thanksgiving, I'm not comfortable seeing numbers that big with a fetus in tow.

Finding a strategy to help you through the day while still allowing yourself to join in the epicurean fun is important. So here's what I'm going to do:

I'm planning to try to avoid unhealthful snacking during the day, sticking with fruit, yogurt and protein so I'm not starving, but not full. At dinner, I'll try everything, then go big with my one, true Thanksgiving love--Grandma Falk's Party Mashed Potatoes.

After that, before pie time, I'm going to strap on my tennis shoes and take a walk when my blood sugars are peaking. This is a strategy I use almost every day. I find that moderate exercise really helps my insulin 'kick in' so I come down from post-meal highs faster. And, if I get to it while those sugar levels are peaking, I don't end up with a low blood sugar like I do if insulin is already bringing me down.

Dessert comes after the exercise. This is also a good strategy for me. My body isn't too friendly with meals containing more than about 80 grams of carbohydrate, and it's not just me. Insulin to carbohydrate ratios can stop working when you get to levels this big. So, taking some time between dinner and dessert is an easy way for me to let my body deal with one cycle of eating before I start another.

Happy Thanksgiving everyone!

First Trimester: Baby is a sugar monster!

About 10 weeks into pregnancy, many diabetic women start to become more sensitive to insulin. Growing a baby and a placenta is hard work and a great deal of energy, a.k.a sugar, is required. Since you're responsible for making that sugar, you might need a little less insulin along the way.

After an initial increase in insulin to get those early-pregnancy sugars better under control, I needed a decreasing amount of insulin from weeks 10 to 12. I noticed this because I had lots of non-exercise related low blood sugars, especially in the afternoons, and in some cases my blood sugars didn't increase at all after meals. You like to see a moderate bump.

So, my endocrinologist and I toned down my insulin by about 10 percent in a combination of decreasing afternoon basal rates (or long-acting insulin if you're not on a pump) and reducing my insulin to carb ratio (the amount of insulin you take for however many grams of carbohydrate you eat) in the evening. My correction factors, the insulin amount you give if you have high blood sugar, also came WAY down, by more than half.

During this time, I recommend being extremely vigilant about those low blood sugars. My own blood sugar thermostat can usually catch symptoms of lows around 70 mg/dL... but the magic of pregnancy and its hormonal influence on the 'flight or fight' response pushed that well into the 50s. You will likely be asked to check some 3 a.m. readings to make sure you're not going low in the night when many people are unable to sense their changing blood sugars or wake up to treat them.

Around week 15, as the placenta and its 'evil' hormones kicked in, this insulin sensitivity trend began to reverse, and I was again upping afternoon and evening basal rates as well as jacking up my evening carb ratios. My endocrinologist said some women continue to be insulin sensitive until week 16 to 18 of pregnancy.

You'll get to hear a lot more about my love hate relationship with the placenta in coming posts. It is an amazing organ, as it better be since you spend half of your pregnancy growing it. But, since it's only looking out for maximizing fuel for baby, it presents some challenges for the diabetic mom.

World Diabetes Day!

Want to know what's not in the headlines of any of the major or minor daily newspapers I scan every day? It's World Diabetes Day, as sponsored by the World Health Organization.

Today, as a non-pregnancy post, I would like to think fondly of everyone I know in the world with diabetes and all the thankless things they do to take care of their health. I would also *especially* like to draw attention to the growing number of diabetics who live in places where access to medication, insulin and blood glucose testing supplies are rare, very rare.

By now we all know that good glucose control is the key to living a long, healthy life with diabetes and without complications. It's a challenge for me, and I have access to every technology and trick in the book. To those who manage without multiple daily fingersticks and daily injections, I tip my hat to you.

Please take a minute to read more from the WHO about diabetes around the world. And thanks to the WHO for the use of their logo above.

Blood Glucose Goals... Babies are tough customers

Although you've already been encouraged to keep rigorous control over blood sugars and document them daily through glucose logs and food and exercise diaries, once you're pregnant, diabetes control expectations skyrocket.

Here's a picture of what the recommended Blood Glucose goals for pregnant women look like, according to my doctors.

Fasting: (that's your first finger stick, right after you wake up)
Under 95 mg/dL

Pre-meals, similar to fasting:
100 mg/dL or less

1hour after you eat:
under 140 mg/dL

2 hours post meal:
under 120 mg/dL

Notice something different? Yep. Those are pretty significantly lower than your pre-pregnancy guidelines.

Women adopt many strategies to reach these goals. Some limit their carbs to under 45 grams per meal (a recommendation of my doctor) to make sure that they don't overload the system, but still get some of the carbs that are necessary for baby's good neurological development. For this reason, I was cautioned against going on a low or no carbohydrate diet, especially during the first trimester.

Other women continue to eat as they'd like, but really up the insulin. Given that diabetes in pregnancy is a fluid issue, women will likely have to reset their insulin to carb ratios and correction factors very frequently. I'm changing things on a weekly basis at this point, 16 weeks. More on that later.

I found that overeating or having a second portion of anything that wasn't salad or vegetable significantly raised my post-meal blood glucose values, especially after dinner which then carried over through the night. So, I now try to concentrate on putting dinner away when I'm full, with the promise of some dessert if I'm hungry later.

So you're thinking baby... go see the doctor first

Many diabetes doctors strongly recommend their female patients practice some sort of reliable birth control to avoid accidental pregnancy. Although you might not fully understand the relationship between your uterus and your pancreas, these docs want to prevent the increased risk of congenital heart and neural tube defects that come with having high blood sugars during very early pregnancy, before you'd ever have a positive pregnancy test.

Because of that increased risk to the baby, endocrinologists recommend that women start practicing aggressive blood sugar control and get their Hemoglobin A1c (Hb A1c) tests below 7.0 before abandoning contraception and letting nature take its course. In fact, many endocrinologists want to see even lower Hb A1c levels, like below 6.0 in non-diabetic range, before giving the pregnancy green light.

Those are some super aggressive goals, and will likely be difficult for many ladies to meet. This is yet another reason to meet with your endocrinologist to try to find strategies to help you get there. Often a change of insulin doses or other medication, carbohydrate counting refresher course, or a week or two of food and blood glucose logs are all you need to breath new energy into your diabetes management routine. A potential pregnancy is a great motivator.

The first trimester- Morning sickness

Since about half of all pregnant women experience the all-day nausea and vomiting erroneously termed 'morning sickness,' it's fair to say a bunch of diabetic ladies are going share this joy as well.

I escaped morning sickness, but it remained high on my endocrinologist and obstetrician's lists of concerns. When diabetic women have trouble keeping food (or sometimes even drink) down, dangerous low blood sugars can become a major problem. Being passed out and nauseous is definitely worse than just being nauseous. Not to mention that low blood sugars themselves can often cause nausea... a double diabetic mom whammy.

So, if you're feeling ill and getting a lot of lows, don't hesitate. Call your doctor. Together you may change your basal insulin rates, if you're on a pump, or your long-acting insulin dose. It will be easy to change back once you're feeling less sick, or if you reduce them too far.

Doctors recommend anything full-sugar and ginger-based to me, as ginger is a natural anti-nausea food. A sailor friend of mine keeps ginger gum on his boat. Think ginger ale, ginger snaps and other easy on the tummy products that can help you keep blood glucose up, especially if you can't eat regular meals. It will definitely feel weird to drink real soda. Enjoy the moment if possible! It will not last very long.

The Big Three... ok, maybe Four.

First, we should really get the basics down. How does diabetes, and most specifically high blood glucose levels, affect the baby?

Well, we've got three definite relationships between mom's sugar and the baby and a less defined fourth relationship that's currently the focus of a TON of research.

1. Early, and I mean very. During the first trimester and more specifically the first ten weeks of pregnancy, your body is helping that baby develop all his or her organ systems. When mom has high sugar levels, so does the baby, and this can mess up organ formation.

Diabetic women have twice the risk of having a baby with a congenital heart defect (a problem with the heart's structure that forms because the heart doesn't develop correctly), neural tube defects (similar to congenital heart defects, but these involve the spine and brain and are often more serious) and some leg malformations.

But, the elevated risk goes right on down to that of a non-diabetic woman if blood sugar levels are kept in check! This is why doctors are keen to get every lady's Hb A1c test (a 3-month measure of glucose levels) to 7.0 or lower before conception.


2. Grow, Baby Grow, but Slow! After trimester one, a diabetic lady's main concern is keeping those sugars in control so she doesn't end up with a 16-pound baby that she can't possibly deliver naturally.

What's the connection between big babies and mom's glucose levels? The kid's insulin. That's right, despite you not making any (Type 1s) or not making enough (Type 2s) the kid is pumping it out and refusing to share as early as 10 weeks along. So, when you give him or her blood with high glucose levels, that proto-pancreas uses baby insulin to bring it right down for the fetus.

But lots of insulin makes things big... so much so that there are reports that athletes us it in performance enhancing drug cocktails. So, babies can get too big, too.


3. Delivery. Piggy-backing on #2, if a baby was just born to a mom with high blood sugar, he or she is likely to have a lot of insulin floating around that little body. But, when the kid is out of that sugary womb, there's no glucose to burn. This means the baby can have his or her very first low blood sugar.

Infants already have super low blood sugar readings (40 mg/dL is considered normal) but if it falls below that, your child might be taken to the neonatal intensive care unit so nurses can raise blood sugar levels with formula, and if necessary an I.V. This is WAY less fun than hanging out with your baby, and so maintaining good glucose control up to the very last second of pregnancy is important. And, I would be remiss if I didn't also include after pregnancy so you heal quickly and have the energy to take care of the new little one.

4. Fetal Programming... it gets heavy So far, we've talked about the direct relationships between maternal diabetes, blood sugar control and the baby. But, science is pointing to a whole new set of more subtle relationships between a mom, her womb and her baby. This is called fetal programming.

This process happens in every woman, diabetic or not. Aspects such as mom's body weight, cholesterol levels and glucose levels have subtle effects on the fetus that increase a child's later risk of developing obesity, diabetes or other metabolic conditions. Even things like working out while you're pregnant can affect your baby later in life.


I'll write a lot about fetal programing later on, but first a practical word of caution and encouragement: DON'T FREAK OUT.

As a diabetic woman hoping for a healthy and happy pregnancy, there is one thing you can do to definitively make a positive impact on your pregnancy. That is keeping those blood sugars under control. Now that you're pregnant, you can't become un-diabetic (Type 1s or Type 2s), so don't give it a moment's thought. Just focus on those glucometer numbers and press on.

How we got here.

As a diabetic person, I'm constantly trying to find new information about the condition, treatments and the experiences of other people with diabetes. But, when the time came to start a family, I was really surprised by the lack of resources out there for women with diabetes who are going to become pregnant.

Obviously, I had a million questions. What kind of insulin and blood glucose changes could I expect? What sort of doctors would I need to see? What sort of effects would diabetes have on my pregnancy and infant? Should I even bother reading about 'normal' pregnancies?

The only resources out there were one book, Balancing Pregnancy and Pre-Existing Diabetes by Cheryl Alkon, that I recommend as a great resource for reading about the experiences of many diabetic women and their pregnancy strategies, and the medical literature, which I found alternately terrifying and unreadable. I wanted something in between

To fill the void, I started doing a lot of research. I'm a science and health writer by day, so I'm really comfortable translating dense medical information into a palatable form for people without M.D.s. I also wanted to include my own experiences, so that my handful of diabetic friends and hopefully a wider female diabetic community might find this information to be a useful tool when it's time to start their families.