Type 1 Diabetes and Pregnancy: Myths vs. Reality

October 22, 2012By 11 Comments

As I come into my 22nd week of pregnancy, each little kick from my baby girl reminds me that there is, as my husband puts it, a Massachusetts resident living inside of me.  I also just received my weekly email from Baby Center telling me that today, at 22 weeks, my baby’s pancreas is starting to fully develop.  Just one more thing to think about… is that tiny pancreas already being put to work to make up for any high blood sugars I am having?  Mother’s guilt has begun.  As the weeks go by, and my belly grows, I get more interested questions from people about my pregnancy.  Most of them start with something like this; “Now, with the diabetes, um, well, what does that mean…?”

I can see how it can be a sensitive subject, where people don’t want to feel like they are being too inquisitive or assuming something.  But I am ALWAYS so glad when someone asks, as it gives me the opportunity to set the record straight.  Here are a few of the common comments/questions I have been getting:

–         ” So how is your gestational diabetes doing with the pregnancy?”

–          “Well, you know your baby is going to be huge, so don’t bother getting a small car seat!”

–          “Will your baby automatically get diabetes?”

–          “Is a c-section inevitable?”

First of all, and I could explain this in my sleep I’ve told it to SO many people; women are diagnosed with Gestational diabetes when they present with glucose intolerance DURING their pregnancy.  They were not diabetic prior to the pregnancy (although I would bet they were somewhat insulin resistant) and they will not necessarily have diabetes after their pregnancy.  Gestational diabetes and Type 1 diabetes, although treated with some of the same precautions, are actually often dealt with like two different diseases.  Most women diagnosed with Gestational are not put on insulin, and only on diet/exercise and potentially an oral medication such as Metformin.  Unfortunately for these women, they have to follow a strict diet so that they can avoid taking insulin injections, to keep their bodys’ current production of insulin up to par with their meals.  For these women, I wish more than anything there was more intensive care available for them.  When I see the lenient advice that is give to Gestational diabetics it makes me angry, as I feel they should be told to check their blood sugars much more frequently (more than 4 times per day) and be made more aware of the risk of health issues to themselves and to the baby.  And better yet, I wish they were tested for Gestational well before the middle of their pregnancy, when already too much time has passed with potential high blood sugars going unnoticed.  Unfortunately, no two Gestational diabetics are alike, so the advice is for the most part very general and often times due to an effort from the provider to not overwhelm the already scared mother-to-be.

For Type 1 diabetics, we have been told from day 1: Get your blood sugars down to normal range months before even trying to conceive, and that means check your blood sugar 12 times a day if you have to and either go on an insulin pump, or if you already are, wear a CGM every single day.  Oh, and remember, anytime your blood sugar goes over 130, you are possibly hurting the baby.  Why is it okay for doctors to scare the crap out of Type 1’s and not Gestationals?  When at the end of the 9 months, the risks are often the same?  Although, years of living with Type 1, may have caused some of us blood pressure and kidney issues that can be more damaging to our pregnancy then for someone who just got diagnosed with Gestational.  However, there are some Gestational diabetics who may have not been taking great care of themselves well before the pregnancy and before they were diagnosed.  This is NOT everyone with gestational, and I am NOT trying to make assumptions here, as I know many women who have had Gestational who were of normal weight and they run marathons or eat really healthy, and frankly just got the bad end of the stick.  The point I am trying to make is with our healthcare, and how the miseducation and misinformation about these two types of diabetes has not only been misunderstood from a social aspect, but how it has affected us, the patients, and how we are cared for during our pregnancies.

Big babies?  Let me just say this: If I indeed have a large baby, it will most likely be due to the fact that my husband is 6’4” and not because I have Type 1 diabetes.  In the most general terms, if my blood sugars were out of control throughout my pregnancy and specifically in the third trimester, then yes, my poor little tiny baby growing inside of me would need to compensate for my lack of control and would end up ‘swollen’ with fluid from having to produce excess insulin to help my blood sugars.   This very well may happen to me, even with the tight control that I have, there are no guarantees.  However, again, yes, I think I’ll have either a big baby or a tiny baby with an enormous head, which runs in both of our families, but hopefully, none of it, will have to do with my diabetes.  Many years ago, before diabetes was meant to be so tightly controlled during pregnancy, most women did give birth to larger babies.  Times have changed people.

As for the unavoidable c-section?  Well, if it were up to me, my goal would be to try to deliver regularly (with pain medication of course).  I would want this mostly for the benefit to the baby.  By being in a delivery room, and delivering at my own pace, I would be able to make sure that my little girl would be born to a less stressful environment, with an alert mother.  I would be able to bring her to my chest and do that thing that most mothers want to do, which is bond.  Skin to skin is something I have done a lot of reading on, and it is something that is very important to me.  Whisking my poor baby off to the NICU immediately after coming out of me is no way I want to put my baby into this world.  However, and I have to repeat this to myself multiple times before the birth, many things are out of my control.  If I end up being diagnosed with preeclampsia (high blood pressure) prior to the baby’s due date then a c-section would be absolutely necessary for both my safety and the baby’s safety.  With a c-section would come almost a guarantee that I would not be able to put my baby to my chest and that I would be completely out of it to be able to soak in that once-in-a-life time moment.  I have not spoken with my doctor yet about this, but I am hopeful that the hospital I am delivering at will be open to allowing my husband to put her on my chest and keep her there while they stitch me up.  Pending however, that she doesn’t have a low blood sugar.  If my sugars are high the days before delivery, it would cause her poor little pancreas to kick out her own insulin to compensate for the highs, which means as soon as she comes out, she would be low, and would need to go to the NICU.  I may not be able to even hold her for a few hours if this happens.  That would just be heartbreaking… but I have spoken to many of my diabetic friends, some who were traumatized by this experience and others who don’t even remember it.  I guess we will wait and see.  I hope though, that this clarifies things for those who have questions about mandatory c-sections.

Will my baby get diabetes?  Let me start by saying this:  Don’t EVER say to a diabetic mother: “Well, if your child gets diabetes, at least you’ll know what to do and how to handle it.”  I don’t care what kind of chronic disease it is, there is never any parent that wants to be told their child has it.  Never.  Under NO circumstances.  Here is the low down (taken from the Joslin Diabetes Center website)

If an immediate relative (parent, brother, sister, son or daughter) has type 1 diabetes, one’s risk of developing type 1 diabetes is 10 to 20 times the risk of the general population; your risk can go from 1 in 100 to roughly 1 in 10 or possibly higher, depending on which family member has the diabetes and when they developed it.

The risk for a child of a parent with type 1 diabetes is lower if it is the mother — rather than the father — who has diabetes. “If the father has it, the risk is about 1 in 10 (10 percent) that his child will develop type 1 diabetes — the same as the risk to a sibling of an affected child,” Dr. Warram says. On the other hand, if the mother has type 1 diabetes and is age 25 or younger when the child is born, the risk is reduced to 1 in 25 (4 percent) and if the mother is over age 25, the risk drops to 1 in 100 — virtually the same as the average American.

If one of the parents developed type 1 diabetes before age 11, their child’s risk of developing type 1 diabetes is somewhat higher than these figures and lower if the parent was diagnosed after their 11th birthday.

So am I happy with those odds?  Frankly, there is nothing I can do about them.  Will I keep ketone strips in her diaper pail and check her diaper when she has an episode of the flu to make sure it’s not diabetes?  Probably, because I’m a worrier.  But will I tell her I worry?  NEVER.   No one in my family has Type 1.  In fact, no one in my town growing up had Type 1.  I did get diagnosed the same year I got chicken pox, so I do think there is a connection in there somewhere while my body was fighting one virus it introduced itself to Type 1 diabetes.

Thank you for taking the time to read this, and sharing this with people you know are still a bit confused about someone they love or care about that is pregnant with Type 1.  If you have Gestational or Type 1 diabetes, be your own advocate and get the care you deserve from specialists who want you to be in the best control possible.  Please comment if you have any questions!  I would much rather you ask then assume J

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Comments (11)

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  1. Laurie Pariseau says:

    I am so happy for you. I love reading your blog. Hope to see you…at the auction perhaps?????

  2. susan says:

    I am so happy for you!!! HUGS!!!

  3. Veronica says:

    You truly are amazing!

  4. Aidan Bertie says:

    Wow, great news. And I am also proud of you that you take care of your baby.
    Best of luck to.

  5. Emilee says:

    I am so thankful for this post!! I have type one and have had it since I was 7 along with other auto immune diseases. I also can say I had a daughter in 2010 and she is extremely healthy! I am proud of mommies who have obstacles in life and can still have healthy children! So thank you again because this is so encouraging as a type 1and a mom! Good luck with everything and God bless!

  6. Kristina says:

    THANK YOU for this info! Especially about the chances of passing on diabetes to my kids. I’m planning my second pregnancy. My first was AWFUL and I’m dreading doing this again.

    • Regina says:

      Kristina – do your best not to beat yourself up. Try to take on your next pregnancy as if it were your first. You probably learned a lot from your first pregnancy, and your a bit wiser now. Take what you learned and seek out more answers to any questions you have. All you can do is the best that you can. Best of luck!

  7. Krysti says:

    I am currently 36 weeks and 4 days pregnant. I have been very tightly controlled during my pregnancy as a type 1 diabetic. My a1c is the lowest it has ever been. My endocrinologist look at my sugars twice a week and tell me I’m doing great. My obgyn tell me I’m having a large baby most likely because of my sugars. I am scheduled for a c section at 39 weeks. It’s very frustrating going to the obgyn and thinking you did something wrong when they tell you your baby will not be over 11 pounds but will be a big stalky baby. It’s also frustrating because you don’t get to experience the joyful part of pregnancy because, the doctors like to scare you and freak you out. Thanks for sharing your story!

    • Regina says:

      Hi Krysti – Thanks for sharing your situation. It is unbelievable how much joy, as you stated, the doctors can take out of you enjoying your pregnancy. Keep a positive attitude knowing you have done EVERYTHING in your power to keep yourself and your baby healthy. “Big” babies happen to non diabetic mothers as well. Sometimes it’s just genetics! I can tell you that my once 10.1 lb baby is now tall and lean and very active and never had any issues with anything related to my diabetes. The odds are that your baby’s blood sugar may be on the low side right after delivery, but try your best to know that this is completely normal. If you are choosing to breastfeed, stick to your guns and get them to wait to give her any formula, to see if she can nurse for a bit, unless her sugars are dangerously low, this will give her the best opportunity at breastfeeding success and bonding with you. If you do not want to breastfeed, that’s okay too! I would stick with a hydrolyzed formula to help reduce her risk of any allergies since she may be immune compromised (Gerber Good Start, or Similac Comfort). Let me know if you have any questions!

  8. Jamie says:

    Thank you so much for this. I was diagnosed with type one a year and half ago and am currently 2 months pregnant.This helped with the worrying a little <3


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