Childbirth Plan for POTS Patients & Catch Twenty-Two
Genevieve Tyrrell
I needed rest. I took the medical leave. I have dizzy spells at home frequently and I don't drive much these days. But overall, I'm feeling better because I can lie down whenever I need to. My anxiety and depression have improved considerably.
But while I’ve been feeling better by taking medical leave from my work prior to the birth of the baby, I haven’t been able to get a straight answer regarding my “birth plan.”
A birth plan is how you plan to give birth. It considers at-home birth, c-section, vaginal delivery, what types of anesthetic you’ll use, and so forth.
Given my POTS, and given my history of blacking out and pre-syncopal episodes (pre-syncopal or pre-syncope means pre-full-black out. This is when the room starts to go black around the sides, but I’m able to stay awake if I quickly lie down and raise my feet), and given my rare genetic condition concerning choline, I have stated several times now that I feel it might be best to have a c-section. I truly believe I’d black out during labor. I nearly blacked out during my last papsmear for God’s sake.
It’s not a squeamish thing. In layman’s terms, it’s the vagus nerve (which runs from the neck down to the pelvis) getting improperly stimulated, causing the body to black out. Even a bowel movement can create a situation where I’m pre-syncopal.
The problem is I haven’t completely, fully blacked out in years. How is this a problem and not a good thing? Because then doctors use this as an their excuse that I’m doing “great.” Nevermind all the pre-syncopal episodes I still suffer during the year.
It's a catch-twenty-two.
In short, I’ve learned what will cause a black out and I’ve learned earlier signals (like extreme fatigue), and so I’ve prevented black outs by not doing activity—often basic activity—and just lying the hell down. But because I’ve become so great at preventing black outs, that comes across as my health problem isn’t that bad. And often pre-syncope seems to be taken either with a grain of salt or as an exaggeration. Unless I lose consciousness it’s not considered serious enough. This was the problem that made it difficult to get diagnosed in the first place for so many years.
So my OBGYN referred me to a cardiologist for testing and consult to figure out my birth plan of action. He’s been under the opinion that if I have a c-section, he’s considering it “elective,” which then means my insurance company will not cover two thousand dollars worth of the surgery. It will be an out of pocket cost because the doctor has not deemed it necessary.
I had hoped the cardiologist would be able to offer her opinion that a c-section would be best. Instead, I got put through the lousy holter monitor that didn’t always work, and an echocardiogram (which is where I caught that terrible virus with bronchitis back in August – a fluke disaster). I’ve had many of both. But whatever. I went along with the basic tests as a formality.
Her 15 minute follow up appointment she stated, “I don’t want to get into trouble,” meaning sued, for recommending a c-section, “just in case something goes wrong with the c-section.” She said, “There just isn’t the language to state to the insurance company that would recommend c-section for POTS. We don’t have the research to back it up as necessary. Other women have done fine.”
I get it. It’s her livelihood. I wouldn’t want to be sued either. But I really feel like she only spent two 15 minute appointments with me and barely knew my health history, yet charged hundreds of dollars for these consults. And I really feel like she has no understanding of the varying degrees of POTS severity. Some women ARE indeed fine with vaginal birth. Some women don’t have POTS severely. I, on the other hand, have had POTS severely. She’s definitely by no means anywhere close to being an expert. She told me she had done “some reading.”
I told her, “I gave you the NIH documentation stating that I have an abnormal baroreflex response. All of child birth is the baroreflex.”
The baroreflex is the bearing down reflex you use for a bowel movement and for child labor.
“There’s just nothing to back up needing a c-section.”
“Can’t we retest the baroreflex then?” It’s a simple, fairly painless test where you bear down on a device in your mouth, but something tells me Winnie Palmer probably doesn’t even have that test on hand.
She couldn’t answer this and adjusted her notes.
I started to cry and said, “So, okay, I need to know: if I have the vaginal birth and I black out during labor, what is the protocol?”
She got strangely hesitant about answering this.
I said, “If I black out—which is most likely going to happen—will the baby be cut out in an emergency c-section?”
Mind you, an emergency c-section can be worse than a planned one. The incision can be bigger and also sometimes sliced at a different angle (up and down the abdomen/ pelvis as opposed to a smaller incision across the lower pelvis). It can be harder to recover from.
I never got an answer out of the cardiologist. She deferred to my OBGYN and changed the subject to how she’d confer with an electrophysiologist about c-section and POTS. An electrophysiologist has nothing to do with the baroreflex or testing this and I said that. She agreed but said he might have ideas about whether the c-section could be deemed necessary. Whatever that means.
Here I come to find out, there IS NO protocol if a woman blacks out during childbirth. In fact there’s not much protocol for a lot of emergencies during childbirth for the entire United States.
Check this out: