Kaleena Berryman has been on a mission to empower and mentor mothers of premature babies.
When Kaleena Berryman's baby was born premature, she felt like she had to make her son's life, and their journey together, mean something.
Jharid Smith Jr. came into the world weighing just 1 pound, 5 ounces and had a slim chance at survival. Jharid had difficulty breathing, a bowel infection and blood on his brain. Vision in his right eye was impaired, and he had no sight in the left. But most devastating was the diagnosis of cerebal palsy.
Four years later, Jharid doesn't walk or talk yet, but Berryman has become her son's voice, as well as a mentor for other parents like her.
"I'm trying to eliminate the stigma that you had to do something wrong to have a preemie,'' said Berryman, who lives in Jersey City . "It took me a long time to get over that feeling.''
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With 13,000 followers plugged into her Facebook page - Praying 4 My Preemie - Berryman has brought her advocacy to Newark, her hometown.
She recently started the Preemie Parent's Club at University Hospital, and it has given new life to a similar support program the hospital has had for many years.
"I've seen mothers come more frequently to talk to her,'' said Dr. Onajovwe Fofah, a neonatologist, which is a subspecialty of pediatrics. "Their eyes light up. Coming from her it's more impactful.''
Berryman said she didn't know any mothers of preemies when Jharid was born, and she didn't have a support group to lean on when she was in the hospital. But after she was discharged, Berryman said she began to search the internet and found preemie organizations.
She started blogging about prematurity and writing poetry on the subject. Her poem about Jharid, "On the day you were born," went viral.
She turned sadness into action, and has become a sounding board for mothers whose tiny children, those born in less than 37 weeks, are cared for in the neonatal intensive care unit.
Twice a month, Berryman meets with the mothers of the club through a grant that is designed to start support groups at University Hospital and Newark Beth Israel Medical Center and reduce racial disparities in preterm births. The $3,000 in funding comes from the March of Dimes, a national nonprofit organization that has a campaign to reduce preterm births across the United States.
The group, which works with University Hospital, says America's preterm birth rates have worsened for the first time in eight years. In its 2016 premature report card, the March of Dimes gave the U.S. a "C" rating because the country's preterm birth rate of 9.6 percent is higher than the 8.1 percent the organization wants to achieve by 2020.
Statewide, New Jersey also received a C, but locally Essex and Passaic counties were rated "D," with preterm birth rates of 11.2 percent and 10.5 percent, respectively. Hudson and Bergen counties were rated "C," with preterm birth rates of 10.1 and 9.8, respectively.
The picture, unfortunately, is particularly bleak for African-American women in New Jersey. According to the March of Dimes, their preterm birth rate is 44 percent higher than that of all other women in the state.
"The average African-American woman has a higher rate of having a premature birth than any other racial group,'' Fofah said. "We don't know why.''
His colleague, Lynda Arnold, director of Family Health Services at University Hospital, said mothers can do everything right during their pregnancy and still deliver early.
"It happens to people who went to the doctor, didn't smoke, didn't drink, didn't do anything,'' Arnold said.
And that's where Berryman takes over.
She's encouraging, telling mothers they should not feel shame or guilt.
At the meetings, she tells them, "You did nothing wrong.'' And she prepares them for situations that may arise, explaining in layman's terms medical conditions their children could face: necrotizing entercolitis, a bowel infection; patent ductus ateriosus, a hole in the heart or heart murmur; decreased oxygen levels that can make a baby turn blue and require a blood transfusion.
Raviane Dailey Porter of East Orange said she was "freaking out,'' when her 1 pound, 9 ounce daughter struggled to breathe and had an irregular heartbeat.
Since December, Dailey Porter said, Berryman has been reassuring her. "She'll send you a text to see how you are doing. Sometimes you really need that."
The women in the group meet twice a month and open up about their concerns and fears. Sometimes they laugh, sometimes they cry, but they always leave feeling empowered by the information they receive about what to do and what questions to ask.
Now, they check on one another.
Olga Cordero, of Newark, said having a premature daughter weighing 4 pounds, 5 ounces made her nervous, especially when the child had surgery on her back and another to remove fluid on her brain.
Last Friday was Cordero's first meeting at the Preemie Parent's Club, and she says she plans to attend the next one after listening to Berryman and Roxanne Shante, an inspirational guest speaker.
Shante, a Newark resident and hip hop artist, gave the women an emotional lift when she told them that her daughter, who was born prematurely 21 years ago, is now a college graduate.
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"Preemies are very special people,'' Shante said. "God doesn't give them to everyone. He gives them to those who he knows can take care of them.''
Berryman said she has been compelled to tell Jharid's story because too often, people forget about children with challenges.
She calls Jharid her "Sonshine,'' a play on words. His father, Jharid Smith Sr, who is her fiance, has been there every step of the way. With help from friends and family, Berryman said, Jharid is a healthy child. He loves to be jostled around playfully. He likes watching basketball and football. And the "Harry the Bunny" cartoon and "Family Feud" are his favorite television programs.
People follow Berryman and Jharid's progress on Facebook, leaving supportive posts that spur Berryman on.
"He (Jharid) couldn't just be born and I not talk about it and not try to make a change,'' Berryman said.
Berryman said she doesn't worry about the future anymore. She just lives in the present, leaving tomorrow to take care of itself.
Barry Carter: (973) 836-4925 or bcarter@starledger.com or nj.com barry carter or follow him on Twitter @BarryCarterSL