Every Child Counts: Stopping Infant Loss

Nov 13, 2014, 3:08 PM, Posted by Sheree Crute

“Matthew was born big and healthy, just under eight pounds,” Carol Jordan says.

That’s why it was such a shock to her to lose him on an otherwise average Sunday afternoon.

“We had just gotten home from church. My daughter Taylor and my other son Jacob settled in with their video games,” Carol recalls. “I breastfed Matthew and lay him down on his back in his bassinet. He was 3 and ½ months old. About 30 minutes later, I went to check on him. He was on his stomach and he was not breathing.”

Despite being overwhelmed by grief, Carol remembers, “I had two kids to take care of and that got me out of bed each day.” Matthew was a victim of Sudden Infant Death Syndrome (SIDS), a leading and little understood cause of infant mortality. With the love and support of family, friends, and First Candle, one of the largest SIDS support organizations in the country, the family slowly recovered.

A year after Matthew’s death, Carol gave birth to a daughter, Rachel, in 2002, whom she calls “my little gift,” but she continues to give back. In addition to holding an annual Matthew Jordan Golf Tournament near her Decatur, Ga., home, to benefit the CJ Foundation for SIDS, she is working to open a camp for children who have lost a sibling to SIDS.

Carol is one of the many African American women who disproportionately experience infant mortality—the loss of a child in the first year of life. When it comes to life-threatening pregnancy complications, infant mortality is one of three issues—including fetal mortality and low birth weight (LBW)—that are more likely to threaten the lives of African American, Hispanic, and Native American children than white babies.

A Quiet Crisis–Uncounted Losses

America's infant mortality rate is in fact high for all women; the US ranks 56th in the world, and the lowest of any wealthy nations. The rate among white women is 5.33 per 1,000 births. For African Americans, the rate is more than double that number at 12.40 per 1,000 births. Among Hispanics and Native Americans it is. 8.41 and 7.18 per 1,000, respectively.

Yet these statistics tell only part of the story. The rates for fetal mortality (the loss of a child after 20 weeks of pregnancy) are nearly as high for children from these communities of color, with 23 percent of the babies lost after the seventh month. Again, the rate among African American women is more than double that of white women; likewise, the rates are disproportionately high among Hispanic and Native American women.

Low birth weight (under 5.5 pounds) and very-low birth weight (under 3.4 pounds) is also disproportionately high among African American infants (13.4 percent and 2.9 percent) compared with 7.2 percent and 1.2 percent for white women.

If a child does survive being born underweight, he or she may face a lifetime of heightened health risks—including increased odds of respiratory, cardiac, and developmental problems in childhood, and possibly higher rates of hypertension, diabetes, heart disease, and joint disease in the knees and hips in adulthood.

My Baby Matters

As part of a national movement to find solutions for this persistent crisis in infant health, the documentary Surviving One Year focuses on the epicenter of America’s infant mortality crisis—Rochester, N.Y., the fifth poorest city in the country. In this community, children of color are three times more likely to die than white infants. The film, which will air on PBS, is part of the series America by the Numbers (check your local listings or the PBS website for broadcast times).

Poverty is at the root of the problem in Rochester, but when it comes to pregnancy complications in Black women, other issues are in play. College-educated African American women still have higher rates of preterm birth and LBW, for example.

Another important contributor to the infant mortality puzzle, says Joanne Cacciatore, PhD, and founder of the MISS Foundation, is the confusion surrounding fetal mortality.

“Fetal mortality is still a great mystery. We don’t exactly know the statistics because each state defines it differently,” she says.

Cacciatore and her colleagues explored issues such as the lack of attention to fetal mortality prevention in the Lancet series “Stillbirths: Why They Matter.” In some instances, she notes, “uninsured women, or women with poor coverage, for example, are allowed to go post-term because of the cost of caesarean delivery, but every day a woman carries past 41 weeks increases her chance of a stillbirth. There is also a tremendous lack of support for mothers who experience fetal loss at any point in a pregnancy.”

Myra Gomez knows the issue well. “One of my twins, Angela, passed away at 23 weeks. In order to protect Alessandra, her sister, I carried them both for 34 weeks. I delivered my sleeping baby and my survivor.”

Yet, says Gomez, who is Mexican and lives in Dallas, “we have a tradition, novenario, you mourn the dead for nine days, but for my baby, the period of mourning was only one day. People kept saying, ‘At least you had one twin,’” Gomez recalls. “But I am always going to be the mother of twin girls.” She was finally able to heal with support from MEND (Mommies Enduring Neonatal Death).

Tia Jenkins was astonished by the reactions she encountered when she lost her first child after a full-term (38 week) pregnancy. “People around me kept saying `God does not make mistakes,’” Jenkins says, the anger still fresh in her voice after six years. “Tell me that when you have to buy a coffin the size of an ice cooler and put in the toys you bought for your newborn.”

Jenkins was also furious about the care she received. An African American woman who was 28 at the time, she was still at risk for preeclampsia. Yet when she started bleeding during her pregnancy and bloating from excessive fluid, her doctor said nothing was wrong. In fact, she gained only 11 pounds during her pregnancy and her son Adan was only four pounds at full-term delivery. She was determined not to try again.

“Instead, I got pregnant four months later, but this time I secured an appointment with a highly recommended African American woman obstetrician near my Atlanta home. It was a completely different experience.”

When Jenkins began experiencing complications during her second pregnancy, she was monitored bi-weekly instead of monthly, she received nutrition counseling, and was tested and found to have preeclampsia. She spent the last month of her pregnancy in the hospital. Her son Joshua was born healthy at full term, but also at a low birth weight—4.4 pounds.

“He spent 10 days in the neonatal intensive care unit, but today he’s a healthy 6-year-old.” Jenkins says, “I am grateful. I believe the second doctor’s care decisions saved my baby’s life.”

Working Toward Solutions

Improving quality of care may be one answer to helping at-risk infants, according to new research by Eileen Lake, PhD, RN, FAAN a professor of nursing at the University of Pennsylvania School of Nursing. Her work, supported by RWJF’s Interdisciplinary Nursing Research Initiative, revealed that the health of seven out of 10 very-low birth weight African American babies could be improved through nursing care.

Lake’s study adds to the growing knowledge that complex factors, including racism, stress, and inadequate social support, may contribute to the persistently high rates of infant mortality, LBW, and fetal mortality among African American, Hispanic and Native American children.

Sadly, there will always be a need for the work of such advocates as Jordan and organizations such as First Candle and MEND, but there is hope that through increased awareness and improved research, they will have far less work to do.