I Gave Birth. The Most Dangerous Part Came After.
By Laura Kusisto
Wall Street Journal
May 24, 2021 12:01 pm ET
The evening I brought my newborn son home from the hospital last July, I devoured pasta and sourdough bread smothered in fava bean dip.
By the next morning my appetite had vanished.
There were so many strange things going on with my body after giving birth that I missed this warning sign.
Like many American women, I wasn’t scheduled to have my first postpartum exam until six weeks after my delivery. I had little idea how much could go wrong before then.
For a week, burning some extra 500 calories a day breast-feeding, I subsisted mostly on broth and popsicles. Finally I took my temperature and found I was running a low-grade fever. When I called my midwife, she ran through possible symptoms and found nothing obviously amiss. An obstetrician she spoke with said it was likely mastitis, a common infection while breast-feeding.
Good news, she told me, I didn’t need to go to the hospital, which was battling the Covid-19 pandemic. We’re going to keep you safe at home, she said.
A week later I was back in the hospital fighting what had become a life-threatening infection. In the two weeks since I had given birth, I had developed a racing heartbeat, lost 20 pounds and become too weak to change a diaper before doctors detected that something was seriously wrong.
My experience shows the gaps in U.S. postpartum healthcare, doctors I interviewed for this article told me later. Forty percent of maternal deaths from the beginning of pregnancy to the end of the first year after birth occur in the first 42 days postpartum, according to the U.S. Centers for Disease Control and Prevention.
Doctors said there is a lack of patient education about potential complications, which can include preeclampsia, hemorrhage and infection. They also highlighted a typical six-week break in medical care between vaginal delivery and the first postpartum doctor’s appointment, which can hinder early detection of problems. Some also cited a dearth of physician research, training and experience seeing women during this period.
“What happens to a mom’s body once the baby is out is not well characterized,” said Alison Stuebe, a professor of obstetrics and gynecology at the University of North Carolina School of Medicine. “There’s just not a lot of attention paid to it.”
Mara Murray Horwitz, a primary-care doctor and assistant professor at Boston University School of Medicine, said she didn’t realize the “immense gaps” in the healthcare system for postpartum patients until she struggled to get treatment for complications after her own pregnancy. “It opened my eyes to the danger of the postpartum period and the ways it can be so much more dangerous and difficult to access care,” she said.
I was carefully monitored throughout my pregnancy because I have a genetic condition that increased the risk of complications such as premature labor and postpartum hemorrhage. In the spring, when Covid-19 cases in New York City were peaking, I rarely left my Brooklyn home except to take 30-minute Lyft rides to the hospital for extra ultrasound scans and tests. When I went into labor at full term, I arrived at the hospital hours early in case something went wrong.
Nothing did; after a routine labor, I delivered a healthy 7.5-pound baby boy. We named him Jonah.
Four hours after delivery, however, I felt the room spin when a nurse tried to help me out of bed. My blood pressure had fallen to 74/35, a sign I was losing too much blood.
My providers wrote in my medical record that I improved quickly after that first night and by the next afternoon was no longer dizzy or losing blood. Two days after giving birth I walked out of the hospital with my husband and son. In the past several decades, hospitals have begun discharging most women within a few days after giving birth; the move reduces costs and families are often more comfortable at home.
Christopher Glantz, a professor of obstetrics and gynecology at the University of Rochester Medical Center and co-director of New York state’s maternal mortality review board, was one of two independent physicians who examined my medical records for this article. He estimates that about 1 liter of blood had leaked into my abdomen following the delivery leading to the severe dizziness I experienced. Dr. Glantz said that the pool of blood likely became infected soon after we arrived home with our newborn.
During my pregnancy I had an experienced and highly trained medical team, including a high-risk obstetrician, at a top New York City hospital system.
When I interviewed my own providers, they said my symptoms were difficult to distinguish from normal postpartum complaints. Low-grade fevers, for example, are quite common among breast-feeding women, my midwife told me for this article.
When I asked my obstetrician about the blood loss the first night, he said his role as a high-risk specialist was to provide counseling prior to delivery about potential complications but he had no formal role in my postpartum care.
He said the blood was likely hidden deep in my abdominal cavity, where it was difficult to identify. This rare complication was likely caused in part by my genetic condition, which increased the risk of infection, he said.
The pool of blood typically would have been reabsorbed harmlessly, meaning the standard course of treatment is to wait, other doctors told me.
The pandemic also complicated my medical care, and gave doctors more reason to keep me at home rather than send me to the emergency room. My hospital system referred all questions to my doctors.
The U.S. has a maternal mortality rate double that of most other high-income countries, including Britain, Canada and Australia, according to the New York City-based Commonwealth Fund, a healthcare research foundation. The CDC says that about two-thirds of pregnancy-related deaths are preventable; factors include lack of access to care, delayed diagnoses and missed warning signs. Black women and those on Medicaid are disproportionately affected.
To help address this, the American College of Obstetricians and Gynecologists recommended in 2018 that women have contact with their providers much sooner than six weeks-within three weeks after birth for low-risk women and sooner for women at higher risk of complications. (The roughly 30% of women who have cesarean sections sometimes already have a follow-up appointment after two weeks.)
The doctors who authored the 2018 recommendations said such a major change is challenging. “It is old habits. This is a huge culture shift,” said Tamika Auguste, chairwoman of Women’s and Infants’ services at MedStar Washington Hospital Center, who co-wrote the recommendations. My midwife said that in her two decades of practice, she has seen most women after about six weeks and found it effective.
The American College of Obstetricians and Gynecologists also supports in-home visits by a nurse in the days after birth, which is a standard practice in other high-income countries but isn’t always covered by insurance in the U.S. David Allen, a spokesman for America’s Health Insurance Plans, an industry association, said, “Health insurance providers support evidence-based, high-quality, cost effective care.”
Adding more care would increase costs and demands on doctors’ time. Scientists say there’s been relatively little research done on postpartum health outcomes, and doctors note that asking women to come in for appointments that they don’t need could be disruptive for them while caring for a newborn.
Even doctors who support adding more care say it’s hard to find the right balance. “We don’t know how much contact or care that we need that would be beneficial,” said Mark Clapp, a maternal-fetal medicine specialist at Massachusetts General Hospital.
Nearly a week after I first realized I was running a fever my obstetrician sent me to a walk-in clinic, where the doctor was alarmed. She expedited my blood work, which showed my white blood cell count was high, potentially indicating a serious infection.
My husband and I packed up our two-week-old baby and went to the emergency room. An obstetrician there told me my symptoms didn’t seem unusual; postpartum women can have high white blood cell counts. She urged me to go home and take an herbal sitz bath. I wanted so badly to crawl back into bed with my newborn, but I told her I was sure I wouldn’t get better at home.
Doctors ordered additional blood work. The obstetrician told me to make an appointment with another doctor a couple of days later and discharged me.
When I emailed the obstetrician from the ER seeking comment for this article, she wrote that my symptoms were atypical for a serious infection, and she was thrown off because I didn’t have higher fevers and pain. “As an OB/GYN, it is so important to me to listen to women,” she said, adding that “women’s symptoms are sometimes not taken as seriously as they should be.”
The next afternoon the hospital told me to come back in: Tests from the ER had discovered bacteria in my blood, which is a sign of sepsis, a leading cause of maternal mortality. I hung up and checked my temperature. It had spiked to 103.
I spent the next eight days in the hospital. The pool of blood had turned into an abscess the size of a small watermelon, requiring a blood transfusion, surgery and six weeks of antibiotics.
Due to Covid-related visitor restrictions, I wasn’t allowed to see Jonah the entire time.
The night I was admitted to the hospital, when I learned that I would be separated from him, I pressed the call button repeatedly looking for a nurse to help me remove the IV and monitors so I could see him one more time. Finally I ripped the monitors off myself, ignoring the alarms that went off, and navigated my way to the waiting room.
I sat on a gurney in a hallway breast-feeding my baby and searching for a way to say goodbye. I worried who would comfort him without me, whose voice and heartbeat were uniquely familiar in this world he had just entered. Would he need his mother and cry all the time?
Would he forget me? “He is part of you and that is impossible to forget,” my sister texted me.
When I returned home, the caregiver we had hired while I was in the hospital placed my son in my arms. He had gained a pound and learned to lock eyes with me. I felt both wounded and grateful that he had thrived without me.
I was discharged from the hospital with an IV line in my left arm and two surgical drains in my abdomen that made it hard to hold him. Breast-feeding didn’t go smoothly. I talked to a therapist because I struggled to bond with my child after such a long separation so early.
I ultimately made a full recovery, and the only lasting mark is two small round scars where the tubes for the drains once were. When I’m changing Jonah’s diaper or rocking him to sleep in the afternoon light, it sneaks up on me that motherhood finally feels as I had imagined it: Tender and exhausting. Possible.
Write to Laura Kusisto at laura.kusisto@wsj.com
Copyright ©2020 Dow Jones & Company, Inc. All Rights Reserved.
Appeared in the May 25, 2021, print edition as 'A New Mom’s Crisis Shows Care Gaps.'
https://www.wsj.com/articles/i-gave-birth-the-most-dangerous-part-came-after-11621872060