New Jersey's infant mortality gap is the nation's largest

Lindy Washburn
NorthJersey
  • Black babies in New Jersey are 3x more likely to die before their first birthday as white babies.
  • Although infant mortality rates are declining for all races, the gap between black and white in New Jersey appears unlikely to close.
  • 1 in 10 babies in NJ are born before their due dates.
  • New Jersey has the largest gap in the nation between black and white infant mortality rates.
Soludo Onugha was born in September 2015, four months before his due date, weighing 1 pound, 6 ounces. At 20 months, he visited the Children's Hospital of New Jersey at Newark Beth Israel Medical Center, with his mother, Latasha Carter Onugha.  He spent 126 days in the Neonatal Intensive Care Unit before going home. He is a healthy toddler, growing and doing well.

Each year, nearly 500 babies in New Jersey die before their first birthdays.

While that number is much lower than it used to be, it conceals a sad and enduring mystery: Children of African-American women are more than three times as likely to die in the first year of life as those born to white women, no matter what their mothers’ income level or educational attainment.

And that racial disparity is larger in New Jersey than anywhere else nationwide, according to state figures.

Efforts to get pregnant women prenatal care and to give extra support to those facing high risks of complications or early delivery have helped to reduce infant mortality among all races. So have technological advances that give even the tiniest, most premature infants a better chance to survive.

They’ve lowered the overall death rate for babies in New Jersey by nearly 25 percent since 2000.  

But the racial disparity remains.

If the racial gap were closed, five more kindergarten classes in New Jersey could be filled each year and 95 more children would live to celebrate their first birthdays. 

However, that appears unlikely to happen soon.

More:Deaths from SIDS plummet, but it's still a leading cause of baby death

More:'We hold them in our heart': Mother learns to live after deaths of two children

More:What's behind N.J.'s high rate of C-sections?

A recent analysis comparing infant mortality trends in the 50 states found that in New Jersey, blacks are not catching up with their white peers, even though the infant death rate for both races is declining.

While the state’s white babies have one of the lowest infant mortality rates in the nation, a study in the American Journal of Public Health says that, given current trends, it is unlikely the gap will ever close.

In contrast, black and white infant mortality rates in Massachusetts are expected to be equal by 2025, and projections for 17 other states show the rates converging by 2050. But not in New Jersey, Maryland, Delaware and Ohio.

Infant survival is a marker of the overall health of a society. Saving children — and preventing the heartbreak of such loss for families — is both a moral and financial imperative.  

"These are infants who die for reasons that are sometimes preventable," said Ilise Zimmerman, president of the Partnership for Maternal Child Health of Northern New Jersey. "If you can save a baby's life and avoid having a tragedy occur in someone's family, in their community, in their church of synagogue — that's huge. I can't think of a higher, more noble cause."

Racism has a cumulative affect

The inequity between blacks and whites has been recognized for decades, but the mystery of its cause persists. Socioeconomic differences contribute, but actually are only part of the story.     

Twenty years ago, a “Blue Ribbon Panel on Black Infant Mortality” first named racism as a contributing cause of the state’s high rate of black infant deaths. At that time, the mortality rate was 14 deaths for every 1,000 African-American births.

By 2015, New Jersey’s black infant mortality rate had declined by 30 percent — to 9.7. It is lower than the national rate of 11.4 deaths per 1,000 live births, but far exceeds New Jersey’s white infant mortality rate of 3 per 1,000 live births.

“We must understand the long legacy of racism in this country that continues to perpetuate many of the adverse conditions that we see,” Denise Rodgers, vice chancellor of Rutgers Robert Wood Johnson Medical School said at a conference earlier this year. “I will never again talk about health disparities without talking about racism. If I don't talk about racism, it's too easy to blame the victim.”

While diet, obesity and access to prenatal care are important, a growing body of research has pointed to the cumulative effects of racism — rather than race — on the health of black Americans.

The stress of discrimination — in housing, education, employment, criminal justice and personal experience — may accelerate the aging process, these researchers say, causing changes in metabolism, hormones and the immune system. Cells age more quickly. They’ve used the term “weathering,” and have suggested that the effects may be felt particularly by African-American women.

Mothers who themselves were born prematurely also are more likely to have a baby who is born prematurely, experts say.

When the March of Dimes rated the state a “C” — along with 17 other states — for high rates of preterm birth, it noted that black women were far more likely to give birth before their due dates than other women.

In Passaic, Hudson and Ocean counties, the rate of pre-term births — more than one in 10 births — actually increased from 2015 to 2016. (It improved in Bergen, Essex and Middlesex counties.)

High rates of pre-term births and infant mortality, especially for black women, “remain serious concerns,” said Donna Leusner, a spokeswoman for the state Health Department. The state is restructuring its funding “to direct support to programs that show more immediate progress in improving preterm birth rates and reducing disparities,” she said.

The costs to the state for low-birthweight and premature babies already are enormous. Medicaid covers more than 43,000 of the state’s 103,000 births a year. Caring for infants who need hospital intensive care adds at least 20 percent — an additional $150 million to $200 million — to the $700 million bill, the New Jersey Health Care Quality Institute estimated.

Many efforts are underway to improve babies’ chances for survival:

  • Hospital intensive care units are advancing knowledge about how to help the smallest babies, involve parents and facilitate a smooth transition home.
  • Targeted messages about how babies should sleep — on their back, in a crib without bumpers or blankets, and never in the family bed — have helped reduce deaths from sudden, unexpected infant death (SIDS).
  • Group prenatal care and home visits by nurses — both before and after delivery — have helped women with high-risk pregnancies have bigger babies and carry their babies to term.
  • And the state has invested in one-stop shopping — a central intake system in each county to make sure pregnant women in need are connected with all the services they can use, from food and housing assistance to prenatal care. 

Pre-natal home visits

Home nurse visits teen mom: Diamond Phoenix (right) enrolled in the nurse-Family Partnership program when she was 18 years old, and 17 weeks pregnant with twins. She receives regular visits from Shileka Morgan, a nurse who helps support her in her parenting skills.  Alijah and Josiah, pictured, at 1 1/2 years old.

Diamond Phoenix, who lives in Teaneck, gave birth to twin boys in January 2016, when she was 19 years old. For the last 20 weeks of her pregnancy, thanks to a state-funded program with a strong track record nationally, she was visited at home by a nurse.  

The nurse’s name was Shileka Morgan. Her visits have continued as the twins, AJ (Alijah) and Jojo (Josiah), grew from babies to toddlers. Diamond’s pregnancy was considered high risk because she was a teenager, a first-time mother, and expecting twins.

Sitting in Diamond’s living room, Morgan explained that the educational part of her visits has evolved, with the focus shifting from prenatal health to the babies’ growth and development.

“We do weight checks and length checks to make sure the baby is growing well and keeping up with well-baby visits [to the pediatrician],” said Morgan, whose visits are part of the Nurse-Family Partnership, a program of the Partnership for Maternal & Child Health of Northern New Jersey. “And then just be there and be open to our client if they have any questions or concerns.”

Diamond held Jojo in her lap as AJ tumbled around the living room — crawling, cruising and walking a few steps. The two were dressed identically, but she had no problem telling them apart.  “It feels good to have somebody to talk to and to help you,” she said.

When the newborns came home after just four days in the hospital, their care was all-consuming, Diamond recalled. They were a good size — both weighing more than 7 pounds — when they were born at 37 weeks. Morgan taught her “stuff I didn’t know ... Like they’re supposed to have seven wet diapers a day for the first week.”

Diamond lives with her mother and four of her five siblings. Sylvia Tonia, her mom, works two jobs, so Diamond is often alone with the babies. She calls her mother sometimes to ask what to do, and when Tonia doesn’t know, she tells her to call Morgan. Without the program, she would have told Diamond to try the emergency room.  

AJ and Jojo, now almost 2 years old, are doing well, with healthy appetites and lots of energy. And Diamond recently started two part-time jobs, hoping to move into her own apartment. Eventually, she’d like to go to cosmetology school.

The Nurse-Family Partnership has three goals: to improve the health of pregnant women; improve their child’s health and development; and help parents become more self-sufficient by planning their future, continuing their education and finding work.

Founded in Denver, it’s been studied for 37 years in locations nationwide. The content of the visits — from the first trimester through the babies’ second birthdays — has been defined. The Rand Corp. estimates that every $1 invested in the home visits will yield a $5.70 return in reduced long-term costs for health care and social services.

Another program brought together groups of eight to 12 women whose pregnancies were at similar stages, at health centers and hospital clinics in Newark, Neptune, Perth Amboy, New Brunswick and Edison. They met for sessions led by a doctor, nurse or midwife when they visited for prenatal check-ups.  The women measured each other’s weight and blood pressure and talked about their health concerns during pregnancy. Over 10 sessions, they came to bond and support one another.    

The meetings led to a significant decline in the percentage of low-birthweight and pre-term babies, especially among black and Hispanic women. More than 92 percent carried the babies to term. Fewer of the nearly 1,000 women who participated had C-sections than the state average. All of them were on Medicaid and more likely to have high-risk pregnancies because of other health conditions, so those outcomes were particularly noteworthy.

The four-year federally funded research project, called Centering Pregnancy, ended earlier this year, said Celeste Andriot Wood, who directed it for the Central Jersey Family Health Consortium.

“Our challenge now is to identify ways to incorporate these strategies into everyday maternity care,” said the consortium’s director, Robyn D’Oria.  

Premature births require intense care

Half of the nearly 800 newborns cared for each year in the neonatal intensive care unit at Children’s Hospital of New Jersey in Newark are preemies — born up to four months early and weighing as little as four or five sticks of butter, or 1 to 1¼ pounds.  

“These babies are so small that all we can feed them every three hours is one-fifth of a teaspoon,” said Dr. Morris Cohen, longtime director of neonatology at the hospital, part of Newark Beth Israel Medical Center and the RWJBarnabas Health System. At such an early stage in development, babies are not yet ready to eat and digest, he explained; their stomachs and intestines must gradually grow accustomed to even tiny feedings. 

The care provided is intense, round-the-clock and emotionally taxing — for caregivers and the infants’ families.

Soludo Onugha, 20 months, with his mother, Latasha Carter Onugha. Soludo spent 126 days in the Neonatal Intensive Care Unit at Newark Beth Israel Medical Center after his birth in September of 2015, weighing 1 pound 6 ounces.

“I was terrified, terrified,” said Latasha Carter Onugha, who gave birth to a son when she was only two days into her 23rd week of pregnancy. Her obstetrician took several steps to prevent the baby from coming early because of Onugha’s medical history, which included a previous miscarriage of twins. She was on bed rest at the hospital when her labor started.

“He was in the gray area of viability,” when it became clear that his birth was imminent — and impossible to delay any longer, Onugha said. Hospital neonatologists were clear about what to expect: If he was super small — weighing less than 500 grams, or 1.1 pounds — intense medical intervention was not recommended.

Onugha and her husband understood they could “spend as much time with him before he passes away, because babies at this gestation, you know, there’s a lot that can go wrong.”

If he was bigger than that, the hospital’s intensive-care nursery could try its best. It was up to the parents.  

Prepared for the worst, Onugha was surprised when Baby Soludo weighed 1 pound 6 ounces — more than the doctors predicted. He was big for his gestational age, big enough that his parents and doctors decided to give it their all.  

Thus began a life changing journey for Onugha and her husband, both attorneys who live in Orange. For weeks, they didn’t know whether their child would live or die. 

He was no bigger than his mother’s hand. A machine called an oscillator breathed for him. His heart had a tiny hole that would not close. He was attached to so many machines, just to hold him required 10 minutes of preparation by a nurse.   

“I basically lived at the NICU,” Onugha said. She and her husband took shifts. “There were days when we came in and he was on oxygen support, and his oxygen was on 100 percent. If he didn’t do well at 100 percent, there was nothing else that could be done.”

Soludo’s tiny body fought infections. For a month, he didn’t gain an ounce. At 29 days, doctors operated on his heart to close the hole and make it easier for him to breathe.

Another month passed, with infections and ups and downs. But gradually, a day or two went by when nothing bad happened. The couple noticed the staff seemed slightly more optimistic.

“We kind of took those cues, and just held our breath,” she said.

Soludo went home after 126 days in intensive care. The day he arrived in his own nursery, he weighed 4 pounds 10 ounces.

The couple kept him home, allowing few visitors for his first two winters, lest his weak lungs be compromised by a respiratory infection. Onugha quit her job to care for him fulltime.

Soludo has received a variety of different therapies through the state’s early-intervention program, supplemented with private therapy. Different specialists monitor his progress The feeding clinic at St. Joseph’s Regional Medical Center helped him learn to eat solid foods.

Onugha says Soludo has two ages: one based on his actual birthday, and the other on his developmental age. “I still say the experience is very traumatic,” said Onugha. “Even now, if he gets sick, I just go mentally to where I was to when he was in the NICU. It’s something that we all still live with, it’s a part of me.”

This summer, mom and toddler visited Dr. Cohen on the NICU floor.

Soludo, a mighty 23 pounds, walked all over the room in his baby blue jeans, colored suspenders and white polo shirt. He babbled. He grabbed the doctor’s pen and a reporter’s cell phone.

Dr. Morris Cohen, Director of the Neonatal Intensive Care Unit at Newark Beth Israel Hospital, with Soludo Onugha who was born prematurely in the Neonatal Intensive Care Unit at Newark Beth Israel Hospital in September of 2015.

“Look at you!” said Cohen, stooping down to pick him up. “Come over here and give me a hug.”

“He’s doing great,” the doctor exulted.

Soludo’s mother agreed. “He’s just amazing.”