Speak up, be heard: Crucial advice for women after childbirth

Pregnant women can face a great number of health challenges during pregnancy, such as blood clots and very high blood pressure. However, many people aren’t aware that some of these risks linger or can even escalate in the days and weeks after childbirth.

Two of the scariest aspects of this scenario are that women sometimes don’t realize something’s wrong until it’s too late, and if they do, too many are written off when they do seek help. Providers must empower women to be their own health care advocates and respond accordingly when they tell us about symptoms. 

A high-profile case in early 2018 was Serena Williams’ brush with a potentially deadly blood clot not long after giving birth. But even as a celebrity, she struggled to get someone to listen and help quickly. In a striking interview with Vogue, Williams described the experience, which clearly indicates that today’s health care providers must address the disconnect in patient advocacy. 

Serena Williams’ blood clot scare after childbirth

Williams has a history of pulmonary embolus, a condition in which a blood clot can form in a vein in the lower part of the body and then travel to the lungs. Pregnant women are especially at risk for developing clots because of changes in the how the liver manufactures certain compounds during pregnancy and the postpartum period. Depending on the size of a clot, it can significantly impair oxygen exchange in the lungs and cause death. Successful treatment depends on quick diagnosis and medical intervention to keep the clot from getting larger. 

The day after Williams had her baby, she described feeling short of breath. Like many women who don’t want to worry anyone, she didn’t disclose her concern to a loved one. Instead, she went straight to a nurse and asked for a computed tomography (CT) scan and anticlotting medication, which she’d received the last time she had a blood clot in her lung. However, Williams faced an unfortunately common issue: The nurse thought she was confused from her pain medication, and Williams had to insist upon receiving a scan. A Doppler ultrasound of her legs was ordered, delaying the CT that she eventually received. Sure enough, several small blood clots had developed, and she was placed on an IV medication shortly thereafter. 

Even with a history of blood clots and the resources to afford the best health care, Williams’ care was delayed. If providers had waited much longer, she could have become much sicker or even died. This is the crux of a real issue in medicine. There’s often a failure in effective listening to what patients know and are feeling.

ProPublica has published several articles centered around the importance of awareness of post-childbirth symptoms, as well as patient advocacy.  In the heartbreaking story “The Last Person You’d Expect to Die in Childbirth,” ProPublica highlighted the story of a neonatal nurse who died after delivering her child in the very hospital in which she worked. Clearly there is a disconnect in patient awareness, provider communication, and responsiveness, even among experts in obstetrics and patient care. 

‘What feels different today?’

Health concerns such as blood clots and preeclampsia typically present during pregnancy. However, as Williams’ story proves, these conditions can arise in the days or weeks after delivery, often when no signs of trouble were indicated during pregnancy.

Especially during the “fourth trimester,” or the first six weeks after delivery, it’s vital for women to be aware of how they feel physically and to feel empowered to say something. Sudden changes such as shortness of breath or excess swelling might be easier to detect, but sometimes symptoms are subtler or seem unimportant, and too often are disregarded or undervalued by providers and loved ones.

My colleagues and I encourage women to ask themselves every day in the weeks after childbirth, “What feels different today?” After delivery, many women feel sleep-deprived, a little emotional, and fully focused on the newborn. But taking just a moment to assess physical changes day to day can help women focus on the sometimes vague and seemingly harmless symptoms of a severe post-delivery complication.

We recommend calling a nurse or doctor right away for any of these symptoms after childbirth:

●      Shortness of breath

●      Changes in vision, such as blurriness or seeing “sparkles”

●      Headache that doesn’t go away with a dose over-the-counter medication

●      Right upper quadrant pain, which could indicate a liver problem

●      Swelling of the hands and face

●      Vaginal bleeding that is heavier than expected and is bright red

If a nurse or doctor writes off the symptoms, we urge patients to call again or go to the emergency room. It’s unfortunate, but in some health systems, women must become aggressive to get appropriate care. For example, a women interviewed for another ProPublica article, “‘If You Hemorrhage, Don’t Clean Up’: Advice From Mothers Who Almost Died,” recommended to other women who experience vaginal bleeding not to clean up or change clothes. She instructed them to go to the emergency room looking a mess – the staff might believe a disheveled patient more quickly and respond with a greater sense of urgency than if the patient were clean and composed.

We are working with our nurses to create aids to help make sure problems are assessed in a standard way. For example, we’re fine-tuning a program to triage patients who call our nurse line with concerns. While many issues are straight-forward and can be addressed easily, some can slip through the cracks if it’s assumed all the appropriate questions were asked. So, we’re creating a questionnaire that prompts nurses to ask all the right questions – not just those they remember to ask. Such a program could mean the difference between a misdiagnosis that might delay care and swift, successful treatment of a potentially life-threatening condition.

A few closing thoughts

Ultimately, I want patients to act as their own best health advocates. They know what they’re feeling and how it compares to what they typically feel. The next best advocate is a close friend or family member who can tell when something is off – they should be encouraged to say something, even if the patient herself doesn’t recognize the symptoms. It may save her life.

Proper maternal health care starts with active listening. And when providers assess a constellation of symptoms, we must fight the urge to fit a patient to the diagnosis forming in our minds. Rather, we must tailor a diagnosis to the patient based on her health history, personalized assessment, and current experiences. We can improve the quality of maternal care our patients receive. The first step is for patients to speak up – and then doctors, nurses and midwives must carefully listen to what the patients are saying.

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