Friday, August 23, 2013

Monster

On the outside, a woman approaching her medical team asking questions about pregnancy with pre-existing diabetes seems to be a confident woman, merely doing her due diligence in preparing for the toughest role in her future - asking the right questions, gathering facts, paving the way.

But on the inside, that woman is panicked. She has heard from some older relative about how she shouldn't "risk it." She has been told by some medical professional at some point that she'll have to have "perfect" blood sugars (really? perfect?). Dr. Google has thrown her hundreds of scenarios and "facts" and concerns.

What she needs from you, Doctor, is a careful and compassionate hand.

I had my kids at ages 30 and 32, but my journey toward getting pregnant started long before that. Long before that. When I was 24 and constantly butting heads with my endocrinologist, my friend Janet told me about her new doctor - a woman - who was very supportive of her desire to get pregnant. She said she'd switched from our endo (who had said "never gonna happen") and I jumped ship right along with her. I wasn't dating anyone, I hadn't yet met my husband, and my A1c was 8.6% - the lowest I'd seen in my lifetime - finally in the single digits.

Dr. M promised me that we would get there if that was what I wanted. And we started working.

Shortly after I was married at age 28, I saw my first A1c under 7 and I cried. Oh, how I cried. "I can do it," I told myself with magnetic poetry as I posted it on the fridge, July 2008.

I let my amazing endo guide me in all my steps. She told me which OBGYNs she had sent patients to, she moved me to the resident CDE in charge of the preggos, she called me personally to greenlight me when I hit the magic number of 6.1%, and she was this lucid, brilliant, strong voice of reason when others on my OB team demanded numbers and targets that were unrealistic.

She was the one on my team who told me that no one could isolate whether my ketones one evening were from dehydration, starvation, a bad vial, a bad site, or whatever and assured me that my baby would be fine. She was the eyerolling smartmouth who said that if I never went over 120 an hour after a meal (as my perinatalogist was demanding), I'd be "on the floor" by the end of my insulin action.

This is the kind of team you want on your side during a pregnancy and you have every right to that kind of care.

Care. Not scare.

On August 8, I saw what the alternative would have been and I have spent the last few weeks disgusted. Incensed. With an anger roiling in my stomach until it bubbles up into this post. I thought I'd wait until I calmed a bit, but I am more angry today listening to the archived video again than I was the moment I heard it live.


On August 8, I was intrigued to participate in a live interview with one of the leading voices in diabetes and pregnancy via the TuDiabetes Interview Series. Seldom does this stay-at-home-mommy in North Texas have an opportunity to ask questions of someone of that caliber in subject matter so close to my heart.

I was not surprised to hear Dr. Lois Jovanovic rattle off control protocol with which I disagreed. She is notorious for having extremely tight standards for her pregnant patients with diabetes, demanding A1cs below 6.0. I imagine that this is exactly what some patients are looking for - a program with the goal of absolute normal glucose levels throughout the pregnancy.

One of the areas with which I have vehemently disagreed with her in the past is the idea that breastfeeding women should "pump and dump" any milk produced when their blood glucose level is over 150 mg/dL. I have several problems with this. First of all, the baby is no longer being fed by a glucose-rich placenta as it was in the womb. Its pancreas is not working overtime to correct your blood glucose level. The baby is safe. Lactation specialists the world over (and pediatricians, too) have had little to no concerns over breastmilk from a type 1 mother. The content of the milk changes so inconsequentially based on your blood sugar that it's not worth stressing over.

Second, establishing a breastfeeding relationship with my two children has been the single most challenging and most rewarding thing I've ever done - way harder than pregnancy with diabetes, way harder than potty training. Between late arrival of the milk (another type 1 concern), low supply, latches and tongues-tied, nipple shields, breast pumps, clogged ducts, engorgement, and acid reflux, it's thanks to an amazing lactation specialist that either of my kids nursed for the 18months and 18months+still going that they have. The last thing I needed to worry about was pumping precious gold and flushing it down a sink because my BG was 170. Bull. Shit.

But anyway, I digress. Dr. Jovanovic barely brushed the nipple of that concern.

It was her general bedside manner and emotionally harmful statements that sent me into a seizure of bitch switch flipping. flip flip flip flip flip.

She said over and over again that "a fat baby is a sick baby" and had this gem to allow around the 32:00 mark:
[question from the moderator] Are there any long term effects for the children of people with diabetes?
[Dr. J] Well, let's just talk about the fat baby. A baby who's born fat stays a fat toddler, a fat teenager, and has a higher risk for type 2 diabetes. Because you know after all, type 2 diabetes is very common. So the truth is a fat baby could be a fat toddler, could be a fat teenager, and the next generation of type 2 diabetes...
…but the mother can make a difference to make the baby a normal birthweight. A fat baby when it's born, first of all, may have trauma as it's coming through the baby canal because as you can imagine, fat shoulders are like football pads. And if the baby gets stuck in the birth canal, and the obstetrician has to pull and pull and pull - it sounds disgusting but it's true - IT IS TRUE - pulling the head really could mean that you could pull the head off.
Yes. She just said that. I have been pregnant twice. I've read all the popular pregnancy books. I've never once read "be careful the obstetrician doesn't PULL YOUR BABY'S HEAD OFF." What. The. WHAT.

It only got worse as she continued talking.

At the 49:00 mark, Dr. Lois had this to say:
If her A1c is not dropping, there's something wrong. There's something wrong… There's something wrong if her A1c's not dropping. So she needs to know her A1c now and she needs to know it frequently. And then she can have the opportunity to decide when she wants to get pregnant if her A1c is less than 6 and she feels comfortable. Now if she gets pregnant and her A1c is above 6, we just look forward, we don't look backwards and say "What is the risk for a malformed baby? What is the risk for spontaneous abortion?" All that she has to say is that from this moment on, all of her blood sugars are normal. And yes, the risk goes up if her A1c is elevated that she'll have a malformed baby. And let me tell you, what I'm really talking about is no head or no tail. They're really monsters. They really are. And that's actually the best teaching point is for a woman to look to see in the literature how ugly these babies are - sick, or not even alive. That's the motivation for getting the blood sugar normal before the baby starts forming.
Listen lady, the second that you suggested that a pregnant woman dealing with the stresses of a chronic disease be shown headless malformed fetuses, you lost any shred of credibility you came to me with.

Do you understand what you DO when you scare a patient? Does it make them comply with your protocol? At what cost?

Seriously, women in the diabetes online community are having healthy, AMAZING little sugar babies. Fat ones, teeny ones, cheeky ones, and superhero ones. Our whole generation is doing it. With less than "perfect" diabetes management. We're doing it with 300s occasionally from a pump site malfunction. We're doing it with A1cs above 6.0.

Let's address the A1c for a moment. There is more than one way to say what needs to be said to a woman with diabetes.
"MYTH: Having a blood sugar level in the 200 to 300 mg/dL range during the first few weeks of pregnancy (before the pregnancy is confirmed) will cause the baby to have birth defects.
FACT: It is true that the first six weeks of pregnancy are critical because your baby's organs are forming during this time. Fortunately, birth defects are quite rare for women with T1D...One high reading should not cause concern, but rather consistent high readings over time should be minimized."
---JDRF Pregnancy Toolkit
"Tight blood sugar control is what it's all about. IT is the foundation of a healthy pregnancy with diabetes. In brief, the closer your blood sugars are to a nondiabetic's, the lower your chances are of having a baby with health problems....The baby's brain, spinal cord, heart, and other organs are all forming early on, and tight numbers early on will help ensure that those body parts develop as they should."
---Cheryl Alkon's Balancing Pregnancy with Pre-Existing Diabetes
That's why women need to have good habits, a great medical team, and responsive reactions to blood sugars that don't fall within the targets before they get started - to mitigate risk. To give them every opportunity to have the same boring pregnancies that other women hope for - and give them the same risk assessment every other woman has.

Or...alternatively, you can show them headless and tailless fetuses.

You can make offhand comments like "a woman really would need a blood sugar greater than 300 to become acidotic and by that time, your baby could be dead" (14:40) and then the woman who miscarries (as many women do, diabetic or not) can pinpoint the moment when they believe they killed their baby.

You are not a physician, ma'am. You are not a healthcare provider.

You are a monster.

10 comments:

  1. This makes me sick, Melissa. I didn't know about any of this. Thank you for letting me know. I would hate for Grace to ever hear this woman. I always point to you, Kerri and other T1 Moms and tell her, you would have to take care of yourself and find a great doctor who can help you, but OF COURSE you can have a healthy baby.
    Monster indeed.

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  2. I am sick, sick, SICK with venomous disgust toward this so-called "expert" - she's been around forever, I've heard about her and what she promotes for decades - but this goes below the very least of what I can even comprehend anyone saying, EVER. Melissa, thank you for writing this post.

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  3. I'm having a tough time picking my jaw up from the floor. How very sad that someone like this is able to scare women/men, moms/dads.

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  4. Wow.

    Just... wow.

    I'm 20 weeks pregnant today, and I am flabbergasted and utterly disappointed that there is ANYONE calling themselves a healthcare provider out there who would say anything like what you quoted above. But, I am SO THANKFUL for you, and that you are so brave to write about what a crack-pot this woman is.

    And, with that said, my blood sugar was just 177 (after being 58 about 40 minutes ago), and I am ok with that, thank you very much! :)

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  5. This lady is probably the least professional, most ridiculous, and meanest person that I have ever heard of.

    I read this while laying on the floor, playing with my baby son's tiny, sweaty, cute feet.I want to send her a picture of him, of all our beautiful babies, and attach a note that says "You are a cruel idiot. But we, we are amazing and sucessfull and wonderful."

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  6. That's just sick. I'd certainly like to tell her a piece of my mind, & to show her my son.(who, was neither born with three heads OR with any other medical malformations) And my a1c has never ever been under 6. The possibility is there, of course, but telling any mother that her child is a "monster " because of what she did or didn't do just makes my blood boil. Yes, that doctor is a monster indeed.

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  7. I'm so glad you wrote up a public review about her interview, Melissa! I was so irritated by the way she was speaking--which was coated with a bully like arrogance--that I turned it off long before she got to her rant about headless ugly baby monsters.

    Thank you for putting it all out there in such a rationale, informed and accurate manner!

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  8. Wow, thank you so much for this post! I've been planning on watching that video at some point, as hubby and I are in the planning stage, and I thought it might be informative. I'm so glad that I haven't watched it yet - this woman sounds horrific! I can't understand why anyone would think that it's a good thing telling women these terrible things and scare mongering when pregnancy with preexisting diabetes is scary enough as it is. :(

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  9. Wow. Thank you for sharing. I could pretty much echo what Angie said above so thank you so much for sharing.

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  10. This is so crazy, but I know that there really are doctors out there, who villianize T1 diabetics. I was assigned to just such a perinatologist, who by the end of my 1st visit had me crying. The crazy thing is, this was my 4th baby (at age 29), and she spoke to me like I was some ignorant, inexperienced fool. Actually said to me "Didn't anyone ever tell you you shouldn't be having babies?" and "You must be crashing your sugars on purpose so you can cheat and eat a bunch of junk." Not joking. And all of this during a great and thriving pregnancy (my best of them all). We can say it was the first and LAST appointment with her. I will be honest to say that I was great at diabetes care when I was first diagnosed 18 years ago, but when I grew up and moved out of my parents' house, I honestly sucked at it. And my A1C was terrible (over 12) when I found out I was pregnant with my first 2 (not a fact I am proud of, but a fact none-the-less). But I did my best during the pregnancies, and I am so blessed to have thriving healthy children in my life. I don't know why endos think they need to run your life and be a communist dictator over your care. I am so glad to have finally found one that wants to do this WITH me. That has made the greatest impact in my care.

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