So you’ve got type 1 diabetes and you’re thinking about having a baby. We’re not going to lie: pregnancy with type 1 diabetes isn’t a walk in the park. But we’re also here to tell you that you can have a healthy pregnancy and a healthy baby. Here’s the first of a four-part series on what to expect when you’re expecting with type 1 diabetes, starting with pre-conception: what to do and be aware of before you even try to get pregnant.
10 Things You Should Know Before You Get Pregnant
1. Women with type 1 diabetes can – and do – have healthy pregnancies and healthy babies.
This basic fact can get lost once you’re actually pregnant, when it seems like every lab tech, ultrasound technician and doctor you go to wants to remind you that, because of your diabetes, you are automatically classified as “high-risk.” They’ll say things like, “women with diabetes are at higher risk of miscarriage” – or “babies of women with diabetes have higher rates of birth defects” or “women with diabetes are more likely to have c-sections.”[1] This is statistically true if you just look at women with type 1 diabetes versus women without type 1 diabetes. But you might want to push back — because what those statistics fail to mention is…
2. Most of those risks are directly tied to your blood sugar levels
In other words, if you are able to maintain near-normal blood glucose levels for most of your pregnancy, then your baby will be at near-normal risk of the above problems – most studies that do take average blood glucose levels into account show a direct relationship between glucose control and the risk of problems.[2] Unfortunately, many studies on pregnancy and type 1 lump all the pregnant type 1s together, regardless of their HbA1cs (or only measure them at baseline, rather than throughout the pregnancy). And many doctors focus so much on what can go wrong in a diabetic pregnancy that they forget to emphasize what you can do to make things go right. This can make pregnancy with diabetes more emotionally stressful than it needs to be (more on which in a bit). But first, speaking of blood glucose control . . .
3. You want to get your A1c as close to normal as possible (without too many low blood sugars) before you conceive
In order to have the best chances of a healthy pregnancy and healthy baby, you want to have your blood sugar levels as close to normal as possible before you get pregnant. This is because your embryo goes through important developmental steps before you even know it’s there – for example, the neural tube, which becomes its spinal cord, goes through crucial stages of development before you’re even likely to have noticed that you’ve missed your period. To minimize the risk of birth defects, it’s important to be start at a good spot. Talk with your doctor about what your target A1c should be, and practice birth control until you achieve it. Also, start taking a daily supplement of 600 mcg of folic acid (either on its own or in a multivitamin) two to three months before you start trying – folic acid greatly reduces the risk of neural tube defects. Folic acid is important for all women who are thinking of getting pregnant, but especially so for women with pre-existing diabetes, since we’re at an increased risk (again, because of hyperglycemia) of neural tube defects.
4. Be prepared to be seeing a lot of doctors.
You might think that diabetes already requires a lot of time with doctors – but believe me: you ain’t seen nothing yet. As mentioned, having type 1 diabetes automatically classifies you as a high-risk pregnancy. This means that in addition to your regular ob/gyn and endocrinologist, you will also be sent to a perinatologist/maternal fetal medicine specialist, which is a type of doctor specifically trained in high-risk pregnancies. The good part about being classified as high-risk is that you’re going to be seeing a lot more of your baby (via ultrasound) – and a lot earlier — than your low-risk friends. The bad part is that you are going to get really, really tired of waiting rooms.
Before you get pregnant – or early in your pregnancy – it’s a good idea to get your kidney function evaluated and to schedule a visit with your eye doctor to check for signs of retinopathy. Pregnancy can make pre-existing retinopathy worse, so if you have signs of it, it’s important to seek care throughout your pregnancy.[3] You also should get your TSH (thyroid stimulating hormone) levels tested at the beginning of your pregnancy and after you give birth. This is because people with type 1 are at greater risk of thyroid issues to begin with, and pregnancy can affect your thyroid function.
In addition to your normal ob visits (and visits to your endo, who will likely want to see you at least once a month), anticipate some, if not all (if not more!), of the following appointments with the perinatologist/maternal fetal medicine specialist:
– possible pre-conception consultation
– initial visit/consultation once you’re already pregnant
– genetic screening appointment Note: having type 1 may qualify you for insurance coverage for a new type of genetic testing called cell-free DNA, a far less invasive option to amniocentesis or CVS that tests for many chromosomal abnormalities via a simple blood draw. Turns out that there is fetal DNA circulating in the mother’s blood – which is weird and cool. In cell-free DNA, they extract some of this DNA from your blood and analyze it to determine your fetus’s risk of chromosomal abnormalities like Down syndrome.[4]
– early anatomy scan (around 16 weeks) to check to see if your baby’s development is progressing properly
– regular anatomy scan (around 20 weeks) to see if development is progressing properly
– fetal echocardiogram (usually performed after 18 weeks)– an ultrasound (usually with a specially trained cardiologist/ultrasound sonographer) to examine the fetus’s heart for possible defects.[5]
– growth scans – ultrasounds to check the baby’s growth. Type 1 diabetes can affect your baby in both directions. It’s associated with vascular complications that can hinder babies’ growth; on the flip side, higher-than-normal blood glucose levels can cause the baby to grow bigger than it typically would.[6] The exact number of growth scans (and their timing) will be determined by your ob or perinatologist, but they usually begin toward the middle or end of your second trimester.
– fetal non-stress tests. [7] These are tests, usually performed toward the end of your pregnancy, to make sure that the baby is still doing okay and doesn’t need to be delivered early. Your doctor will hook you up to a fetal heart rate monitor, have you lie down or recline, and then monitor the baby’s heart rate as the baby moves. (The “non-stress” part refers to the fact that they don’t do anything to provoke or stress the baby – they’re just observing what’s already occurring and making sure everything’s all right.) These tests, which often take at least 40 minutes (or longer if your baby happens to be asleep!), will begin toward the end of your pregnancy. You’ll probably start with once-a-week tests and then move on to twice-a-week for the last month of your pregnancy.
5. Prepare for extra lab work
In addition to the normal pregnancy lab work, expect to be having a hemoglobin A1c drawn every month instead of the normal three. Other diabetes-related blood draws can include tests for thyroid-stimulating hormone and free thyroxine levels, blood urea nitrogen, serum creatinine, and spot urine-to-creatinine ratios.[8]
6. Get ready for more finger sticks. (And maybe start fighting for a continuous glucose monitoring system.)
As noted, there’s a strong correlation between the rate of birth defects and the mother’s blood sugar levels (in short, the closer to normal yours are, the lower the risk of birth defects in your baby).[9] A continuous glucose monitoring system (CGMS) can be extremely useful in achieving this goal – and luckily, more and more insurance companies are recognizing their importance. But whether or not you have access to a CGMS, plan on 4-7 finger sticks per day at the very least – probably many more.[10] Usual testing times include when you wake, before and one to two hours after meals, before bed, and the middle of night.
7. Watch out for the return of NPH
You may have spent many years happily using long-acting basal insulins like Lantus and Lente, enjoying their long-lasting and relatively steady actions on your blood sugar. If so, you may be surprised when your doctor suddenly recommends – or insists – that you switch to NPH while you’re pregnant.[11] NPH, should you have been born too late to experience it, is an earlier form of long-lasting insulin – and, much like hair-sprayed bangs and MC Hammer pants, it had its heyday in the 90s and has never made a comeback. NPH requires twice-a-day injections and has serious swings in its activity, which gives you much less flexibility in your meals and exercise schedule – and puts you at risk of hypoglycemia when it’s at its peak activity. And yet once you get pregnant, you may find yourself being counseled to go back on NPH.
The reason for this seemingly illogical recommendation – after all, pregnancy is when you’re supposed to have even tighter control than normal! – is that Lantus and Lente have not been studied in pregnant women to the same extent that NPH has. If you don’t want to go on NPH, you can try fighting back with your doctor (and acknowledging that you are aware that you are acting against their professional advice). Or, if you know you’re going to try to get pregnant . . .
8. Investigate your options for an insulin pump (at least for the duration of your pregnancy.)
Insulin pumps eliminate the need for any kind of basal insulin, since they’re able to deliver a continuous slow drip of fast-acting insulin to cover your between-meal needs. They also can give you a lot more scheduling flexibility and precision in your dosing. Most insurance companies recognize the importance of insulin pumps for type 1 diabetics, but if yours has given you a hard time in the past, it’s worth trying again: they may have a different policy during pregnancy. And if you still run into trouble, try contacting the sales team of the pump manufacturer directly. They’re trained in dealing with insurance companies and can help you get coverage.
9. Be prepared for diabetes to become a second job
But wait, you say. Diabetes already is a second job. Fair enough, but unfortunately, in pregnancy, it’s going to get even more intense. Your doctor is likely going to want you to send in weekly logs of your insulin doses and blood sugar levels so that he or she can help you try to continue hitting your blood sugar targets as your pregnancy progresses. Consider asking him/her for a sample spreadsheet for you to use as a template, or (if you’re into Excel) taking the time to set one up for yourself that you can use week after week. Also be sure to ask your doctor what variables he or she wants you to be tracking – in addition to insulin doses and blood glucose values, other options include food/carb intake, exercise, sickness, sleep and stress. Do not be surprised if at some point during your pregnancy, you feel like throwing your logbook out the window. To combat this desire . . .
10. Accept the fact that your blood sugar won’t always be perfect
The blood sugar targets for pregnancy are tight. Like, seriously, nearly ridiculously tight: 60-99 mg/dl fasting, a peak of 100-129 mg/dl after meals, an average daily blood glucose of 110 mg/dl, and an A1c of less than 6.0%.[12] In other words, during pregnancy – a time when hormones are going to make your blood sugars even more difficult than normal – your goal is to not have diabetes. You can decide whether that idea makes you want to laugh or cry – but regardless, here’s the dirty (and somewhat reassuring) truth: no one can achieve these targets all the time. And, what’s more, while it’s important to do your best, there is no evidence that occasionally straying out of bounds does your baby any harm. So when this happens, take a deep breath, take a correction bolus, and try to feel some compassion for yourself: as is always true with diabetes, there are factors affecting your blood glucose that are out of your control.
[1] http://www.diabetes.niddk.nih.gov/dm/pubs/pregnancy/
[2] http://www.diabetes.niddk.nih.gov/dm/pubs/pregnancy/ (“how Diabetes can affect you and your baby”)
[3] http://diabetes.niddk.nih.gov/dm/pubs/america/pdf/chapter36.pdf
[4] http://www.ucsfhealth.org/education/cell-free_fetal_dna_testing/
[5] http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/SymptomsDiagnosisofCongenitalHeartDefects/Fetal-Echocardiogram-Test_UCM_315654_Article.jsp
[6] http://emedicine.medscape.com/article/127547-overview#aw2aab6b7
[7] http://www.acog.org/~/media/For%20Patients/faq098.pdf
[8] http://emedicine.medscape.com/article/127547-overview#aw2aab6c11
[9] http://emedicine.medscape.com/article/127547-overview#aw2aab6b7
[10] http://emedicine.medscape.com/article/127547-overview#aw2aab6c11
[11] http://perinatology.com/Reference/CDAPP%20SS%20Guidelines%202002.pdf (see p. 3) nph (category B): http://reference.medscape.com/drug/humulin-n-novolin-n-insulin-nph-999006#6 (lantus and lente are category c)
[12] http://care.diabetesjournals.org/content/31/5/1060.full