'A Better Birth Experience Could Have Saved My Son': How One Mom is Changing the Conversation Around Infant Loss

Warning: This article contains information and some images related to stillbirth and infant loss.

In October 2017, Tomeka Isaac and her husband, Brandon, had been married for two years when they found out they were expecting their first child, a boy they named Jace. Although the Denver, North Carolina couple had initially explored working with a fertility clinic, they ended up conceiving "the old-fashioned way, and it worked," according to Tomeka.

Although she had no history of diabetes or high blood pressure, Tomeka was told by her OB-GYN to take low-dose aspirin daily to prevent preeclampsia due to two risk factors: being over 35 and African American. Otherwise, her pregnancy was uneventful—that is, up until May 4, a little more than a month before her June 14 due date.

"I had gone to my OB, and Jace had measured small," recalls Tomeka, now 42. Her doctor sent her to maternal fetal medicine specialists to get an ultrasound and a round of testing, which resulted in the expectant parents being told that their son was OK.

But on May 13, 2018, which happened to be Mother's Day, Tomeka began suffering from a terrible stomachache, which she thought might have been due to food poisoning. "My husband was concerned and had a friend come stay with me while he went to work," she says. It's lucky her friend was there, as around mid-afternoon, Tomeka went to stand up and passed out. Her friend called 911 and she was taken to the closest emergency room, and her husband rushed to her side.

The Day That Changed Everything

After fetal monitoring and an ultrasound, the couple was abruptly told their son had died in utero. "They were dismissive," remembers Brandon, 40. "No sympathy—cold and callous."

It was also then that Tomeka was told that she had HELLP syndrome, a pregnancy complication that affects the blood and liver. HELLPis an acronym that stands for Hemolysis (a break down of red blood cells), ELevated liver enzymes, and Low Platelet count, and it can lead to serious liver damage. It can occur at any gestational age or even after birth, with or without a prior diagnosis of preeclampsia. The National Institutes of Health (NIH) notes that urine samples, which should be taken at each prenatal visit, can diagnose HELPP by detecting extra protein in the urine (called proteinuria). Tomeka notes that she did not have any urine tests after the initial verification of pregnancy.

Doctors determined that to save Tomeka, they had to transfer her to a larger hospital that could accommodate the surgeries she needed. "When I arrived, I had a liter of blood in my stomach and a hematoma on my liver the size of a softball," says Tomeka.

The ER team immediately jumped to action, delivering Jace before turning their attention to preventing Tomeka's liver from rupturing. As doctors worked to save his wife's life, Brandon was saying both hello and goodbye to his son. He remembers, "I was studying his face and features so I could tell [Tomeka] how beautiful he was, because I wasn't sure if she would get to see him."

A Long Road to Recovery

By Wednesday morning, after undergoing multiple surgeries, Tomeka awoke alongside her husband and Jace. "Because of all the blood they'd given her and the IVs, her hands were really swollen, and she was intubated, so she couldn't talk," says Brandon. "She couldn't tell Jace she loved him, touch his face—she couldn't do anything. Those moments were stolen from her and then the doctors had to prep her for another surgery."

Doctors managed to slow bleeding in Tomeka's liver and determined that she didn't need a transplant. After a total of two weeks in the hospital, she was discharged and received care from a nurse who visited her home three times a week. The day before Jace's memorial service, the nurse noticed an odor and recommended that Tomeka go to the ER. There, she needed to have a part of her liver, which had been damaged by HELPP syndrome, removed. This meant missing Jace's funeral. "Another stolen moment. I couldn't say goodbye to my son," she recalls. "I was readmitted that night, and I stayed in the hospital until July 5."

All in all, Tomeka spent 45 days in the hospital and underwent seven surgeries.

A Crisis All Too Common

What happened to the Isaacs is illustrative of a maternal morbidity and infant mortality crisis that's impacting Black communities nationwide. According to the Centers for Disease Control and Prevention (CDC), African Americans have 2.3 times the infant mortality rate as non-Hispanic whites. In 2017, African American mothers were 2.3 times more likely than non-Hispanic white mothers to receive late or no prenatal care. And African American, Native American, and Alaska Native women die of pregnancy-related causes at a rate about three times higher than those of white women.

Access to prenatal care isn't so much a problem as the quality of that care, points out the Center for American Progress. In a 2018 report, the organization concluded that current health status, health history, stress, and experiences of racism may contribute to maternal and infant mortality when coupled with lower-quality prenatal care.

Isaac notes, "Many doctors assume that the pain tolerance for Black women is higher, so they don't trust them when they say they're in pain, or they think they don't understand their bodies. Black mothers have to be more diligent, or armed with more information, or know just as much as the doctors to get the same amount of care. It shouldn't be that way."

Turning Loss Into Impact

In the wake of their tragic loss and Tomeka's near-death experience, the Isaacs have found solace in the support of their family and their mission of encouraging an open dialogue with loved ones and strangers alike. "In general, as people of color, we don't discuss these things," says Tomeka. "There's a stigma around stillbirths and miscarriages."

Brandon adds, "There's still a stigma around a father's role in a pregnancy, especially for Black men." He notes that after speaking publicly about their harrowing episode, he's been approached by other men who thank him for being vulnerable. "Often fathers don't talk about these experiences," he says. "They're expected to be strong."

Aiming to continue the conversation in a more global way and address racial disparities in maternal health outcomes, the couple founded a nonprofit in 2019 called Jace's Journey. Proceeds from their charitable efforts—such as their annual 5K and fun run held in Charlotte every October—benefit initiatives that provide maternal education and increase access to care.

While it's clear systemic changes must be made, the couple also encourages expectant parents to do whatever they must do to get their questions answered and ensure that they are heard by their health care providers.

"I thought they were taking care of me when they weren't," says Tomeka. "It's OK to advocate for yourself, and if you have to be construed as one of those 'angry Black women,' be the angry Black woman. If a doctor is not listening to your complaints or your pains—your symptoms—get another opinion. Sometimes, that's not so easy, but you just have to do what you need to do to protect yourself and your baby or your family."

Parents.com investigates the nation's maternal health crisis and what can be done to lower the risk for thousands of expecting mothers. Read more here.