Sunday, June 11, 2023

More Information is Better

via Unsplash

Big content warning on today’s post for discussion of various pregnancy complications, some potentially fatal. As always, this comes with a disclaimer that I am not a medical professional, so my understanding of these conditions is only that of a patient doing her best to get educated   

One of the many challenging things about my birth experience and hospitalization was a feeling that my OB-GYN practice really dropped the ball when it came to explaining any of the factors that started making my pregnancy with LB high-risk. When it came to gestational diabetes (“GD”), COVID, gestational hypertension, the labor complications I encountered, postpartum preeclampsia, and what to do or expect when I still needed blood pressure medication after my six-week postpartum appointment, I got basically no explanation about the implications of any of those things from the doctors in their group. 

With regards to the GD diagnosis, my OB did at least refer me to the Maternal-Fetal Medicine (“MFM”) specialist at the major hospital system where I would deliver. The hospital had a structured GD program to ensure I could get all my questions answered promptly while receiving closer monitoring of my blood sugar results. There was no such help for any of the other things. 

Additionally, communication from my OB’s office about who exactly I was supposed to contact to get enrolled with the hospital GD program was almost nonexistent. I got a referral for that first conversation with the MFM, but no other guidance. I only learned weeks after my diagnosis that the OB-GYN actually intended to refer me for continued monitoring throughout the rest of the pregnancy, not just for a one-off conversation with the MFM. I then needed to call (and MyChart message) around at the hospital myself to figure out who I should talk to. 

At least things worked out smoothly, and I got prompt responses to all of my questions once I was in contact with the hospital’s GD team. (This kind of miscommunication, confusion, and moderate delay in getting additional GD care seems to be somewhat common, based on anecdotes I’ve seen from r/GestationalDiabetes and my due date subreddit.) 

Something that initially caused me some emotional distress during the GD treatment process was that the MFM was… extremely blunt… about the many potential highly dangerous complications that could result from uncontrolled GD. I can barely remember the entire list of scary things mentioned because there were so many that I was overwhelmed during the conversation. The complications discussed definitely included problems with the baby’s blood sugar after birth, macrosomia, preterm birth, shoulder dystocia, and stillbirth. (While I didn’t have many of the typical pregnant person anxieties throughout much of my pregnancy, I was terrified of stillbirth because I found the general statistics about how often it occurs to be extremely scary.) 

Once it became clear to me that I’d gotten “lucky” with GD which ended up being relatively easy to control with minimal adjustments to my typical (and not particularly balanced or healthy) pregnancy diet, I initially felt that the MFM consultation was overkill. Why scare a patient with all the details about extremely unlikely risks when it’s not even clear yet how difficult to manage their GD will be? 

In the MFM’s relative defense, I had disclosed early in the appointment that I was struggling with how to do fingersticks and use the home glucose monitor, and so had almost never checked my blood sugar in the two weeks or so since diagnosis. I might not have sounded like a patient who was taking it seriously. Some of it was probably also the doctor's personality, which leaned towards being more blunt and straightforward, no sugarcoating and heavy on the details and explanations. In hindsight, I actually really appreciate that in a medical provider. 

After everything else I went through, however, I now understand that I’m a patient who prefers to have all the information explained to her, clearly and in great detail. I won’t necessarily fully understand everything right away, while it’s being explained to me, but it’ll help me work through and come to terms with what needs to happen, or what I need to do. 

In hindsight, it’s pretty wild that no one at my OB’s office explained to me why they initially recommended I be induced at 39 weeks – probably because of the GD, but who knows – or what the implications of gestational hypertension were and why it led to a recommendation for induction at 37 weeks. Nobody explicitly told me I had preeclampsia with severe features – based on systolic blood pressure reading over 160 two times while on bed rest - until the resident mentioned it a few days after I got off the magnesium drip. No one ever explained why adjusting my blood pressure medication for several days after the magnesium required inpatient care, which caused me considerable emotional distress. 

It's probably also rather wild that I went along with everything despite the lack of explanation. Based on my research since then, I do think there’s absolutely no doubt - zero room for real debate - that my OB did everything they should from a medical perspective, particularly if using the fairly risk-averse and conservative approach that is my personal preference for my medical care. 

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