What do you do when your doctor won’t listen to your concerns that something is wrong with you or your preborn baby? What does self-advocacy during pregnancy look like when there’s a doctor-patient power differential, when the person with the medical degrees is telling you there’s nothing to worry about, but your body is telling you there is? And how does experience with charting your body’s signs of fertility through fertility awareness prepare you to self-advocate?
Natural Womanhood recently interviewed podcaster and former Broadway actress Stacey Sumereau about the crash-course in self-advocacy she learned from two complicated pregnancies–and why she believes fertility awareness helped lay the foundation she needed for speaking up and being heard when the stakes were high.
A doctor’s dismissal almost cost Stacey and her daughter their lives
In late December of 2020, when Stacey was in the third trimester of her third pregnancy, she suddenly began to experience facial and hand swelling, and her blood pressure spiked. Knowing that these could be signs of preeclampsia, which comes with many risks for mom and baby, Stacey brought her concerns up to her doctor. But because her blood pressure was not clinically high enough (according to generic parameters), her doctor brushed aside the fact that it had shot up over 40 points from Stacey’s personal normal levels.
A week later, at 32 weeks pregnant, Stacey awoke in the middle of the night and discovered that she was bleeding…badly. Once at the hospital, she learned that she was suffering a placental abruption, the complete detachment of the placenta (the baby’s nutritional and oxygen lifeline) from the uterus before delivery. Stacey herself suffered a life-threatening hemorrhage, and her daughter Honora (“Nora”) was delivered emergently via C-section.
Nora required 22 minutes of CPR. Prolonged lack of oxygen during that time led to four surgeries, multiple life-threatening infections, a diagnosis of cerebral palsy, and 126 days in the NICU before Nora could go home. To this day, little Nora receives 100% of her nutrition through a feeding tube, and has a medical team of over a dozen specialists and therapists.
How a traumatic childbirth experience gave birth to an empowered mother
In spring of 2022, Stacey became pregnant with her fourth child. When she experienced warning signs that all was not well this time around, she was surprised to once again have her concerns pooh-poohed, even with her history of placental abruption and Nora’s traumatic birth. But this time, the veteran NICU mom wasn’t having it. She recounted,
“I realized very quickly that my relationship with medical personnel was very different. There was no more me going into something blind and just accepting what the doctor said. The way I used to operate [before Nora’s birth] was that I was afraid to take up too much of the doctor’s time.”
Now, Stacey understands all too well, “Your health is on the line, your life may be on the line, and the doctors are there for you.”
Retroverted uterus: concerning or not?
At her first-trimester ultrasound scan, Stacey learned that she had a retroverted (tipped backward) uterus, which in and of itself isn’t necessarily concerning, and affects an estimated 25% of pregnant women. But starting at ten weeks, Stacey found that when she woke up each morning, she was completely unable to urinate for up to an hour.
Stacey’s husband, who is a sonographer, had previously seen one case where a woman with a retroverted uterus and significant difficulty urinating was diagnosed as having an incarcerated uterus, a rare and serious condition affecting 1 in 3,000 to 10,000 pregnancies, according to the physician resource Up to Date. Whereas a retroverted uterus will usually resolve by itself by the second trimester, a persistently retroverted uterus in the second trimester (and beyond) can become trapped, or “incarcerated.”
Incarcerated uterus: Always concerning
Stacey summarized what an incarcerated uterus is succinctly, saying:
“In very rare instances, the [retroverted] uterus will not straighten up. The way I would describe it is that my uterus would beat everyone else’s at limbo. The baby was tipped backwards, and my bladder was getting pushed up into where my baby bump should have been, and the baby was growing into my backbone, basically. There’s not enough room, the baby is trapped in your pelvic bones and can’t grow beyond a certain point.”
Self-advocacy lesson #1: Learning to ask questions in a way that demands answers
But the nurse at the doctor’s office dismissed Stacey’s call, telling her she had a urinary tract infection. When Stacey requested an appointment right away with her doctor, the nurse demurred, telling her that there were none available. Stacey responded by “asking a question in such a way that they would be legally liable for not seeing me. So I said, ‘Does my situation warrant me waiting until my next [regularly scheduled] appointment, or, if something bad were to happen to me, would an appointment have prevented this?’”
With the phrasing of just one question, Stacey observed,
“[the nurse’s mindset shifted and] It was no longer that I was just this whiny, overanxious pregnant woman, but that I was really asking from a place of ‘you are my care team. I am reaching out to you. If you won’t give me an appointment and something happens, what are you going to be on the hook for?’”
The nurse suddenly found a spot for a next-day appointment.
Lesson #2: Don’t be afraid to ask for additional opinions
Unfortunately, her doctor’s demeanor and words the following day raised further red flags in Stacey’s mind. “The doctor said in her first breath that she’d never heard of this condition before, an incarcerated uterus. And in her second breath, she told me I had nothing to worry about.” But Stacey knew that incarcerated uterus–which is confirmed via ultrasound results showing that a retroverted uterus has not resolved by the second trimester–can cause devastating fetal complications like miscarriage, and/or serious maternal complications like uterine rupture. The woman whose case Stacey’s husband had previously heard of had been taken to emergency surgery.
Stacey noted that “You know if something is wrong with your body.” If your doctor doesn’t listen to you, her second tip for self-advocacy during pregnancy is “you have every right to seek a second, third, fourth opinion.” In the weeks that followed, Stacey visited eight doctors in her search to find one willing to take her seriously. She also went to the ER because one morning she was unable to pee at all. She had a urinary catheter placed and immediately drained an excessive amount of fluid. The doctor said, “If that was a baby, it would be a two and a half pound baby!” Stacey was discharged home after being taught to self-catheterize.
Lesson #3: A supportive doctor will make all the difference
Stacey’s third tip for self-advocacy during pregnancy is to find a supportive doctor. Providentially, a chance encounter several weeks later between Stacey’s dad and a woman at his church led Stacey to a doctor who could help her. The woman herself had experienced an incarcerated uterus no less than four times, and twice had lost a baby–one at seventeen weeks, and another at nineteen weeks. The doctor Stacey was referred to treated her respectfully from the start, indicating with his tone and body language as he listened attentively to her experience that he had all the time she needed. After she finished talking, he said simply, “Let’s see if we can fix it.’”
Stacey recalled, “Within ten seconds he fixed it. The way that they fix it is by literally pushing up the uterus,” either vaginally or rectally. If that doesn’t work in an office setting, the uterus may be manipulated in a hospital under anesthesia, or even via surgery in the operating room. Stacey called the manipulation brief but very uncomfortable, and described the sensation afterwards as “feeling like a giant bubble was rising up in my belly.”
After the manipulation, the doctor asked Stacey about her plans for labor and delivery, referred her to a specialist from a teaching hospital, and planned extra ultrasounds. And while more than one previous doctor had told Stacey she should just avoid pregnancy altogether because of her history of placental abruption, the new doctor was encouraging, nonjudgmental, “extremely supportive,” and clearly ready to facilitate a healthy rest of the pregnancy for both Stacey and her baby.
Lesson #4: During a check-up, anticipate the questions your loved ones might ask about your visit
The fourth powerful lesson Stacey learned about self-advocacy during pregnancy is how to get the information you need during an encounter with your healthcare provider. Now, during check-ups, Stacey says,
“My rule of thumb is to try to put myself in the future, describing my doctor’s visit to my family–my husband, my parents. And when they ask me questions like ‘well, what does this mean? Or, what happens if this happens? Or, what’s the plan if this thing happens?’ When they ask me all those questions, I want to have answers for them. I want to ask enough questions so that I can sleep at night– ‘this is our plan of care, this is where we’re going, this is why the doctor either thinks this treatment is appropriate, or I don’t need treatment right now.’”
Like many moms, Stacey knows:
“It’s very easy for me to advocate for [my children]…it’s harder sometimes to advocate for myself because ‘oh, I can handle it. I can take it.’ But [with Nora’s pregnancy] I didn’t advocate enough for myself, and that ended up almost costing my daughter’s life and it could have cost my life too, easily. It’s really not ever selfish to ask these questions. You don’t want to end up cleaning up a mess, you want to prevent it.”
How fertility awareness sets the stage for successful self-advocacy later on
Throughout their marriage, Stacey and her husband have charted her signs of fertility using fertility awareness (also known as natural family planning, NFP). Stacey described the lessons learned from using NFP, saying:
“Sex has consequences. Life is very, very precious. Using NFP also made us really put the good of the other person first and foremost above our own good. And when you have that in marriage, you can get through those hard times. Month in and month out when you are using natural family planning and are continually sacrificing and communicating with one another, instead of sex being automatically available all the time, that communication is going to serve you well. My husband is amazing and we communicate a lot, and I don’t think we would have that communication at all if it wasn’t for natural family planning.”
All that practice communicating regularly, including about hard topics (as sexuality sometimes inevitably becomes) prepped Stacey to speak up for Nora during her 126-day hospital stay, and then to self-advocate in her fourth and current pregnancy.
Stacey shared her story in hopes of encouraging other women, especially pregnant women, to feel more confident with having hard conversations with their doctors. She summarized her advice, saying tongue-in-cheek “You don’t need to be a diva,” then continued, “but you have every right to ask every question in your head about your health.”
Additional reading:
What to do when your doctor won’t listen to you
Is your doctor not listening to you? What to do when you experience medical gaslighting
Beyond the epidural: labor pain management options
So you’re going to give birth in the United States…what are your options?
