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The Story of Baby Rey

December 17, 2019
Baby Rey Bulletin Board

A photo of baby Rey on the day she was born. The team gave the photo to her mother.

The compassion of our clinicians.

The complexity of our cases.

The humanity of our patients.

On April 13, a baby girl was born by cesarean section at Temple University Hospital. She weighed one pound, six ounces, at just 24 weeks of development. She was 12 inches long.

Cup your hands together and this new life would have fit inside.

Her mother had been living in an abandoned building. She had come to the hospital two weeks earlier, on March 31, when her water broke.

Doctors determined the baby’s due date was July 31 — in four months.

With the help of medications, the mother didn’t deliver for 14 days, reaching the very edge of viability. When the fetus lapsed into distress, not getting enough oxygen, doctors operated fast.

This little baby entered the world gasping, her lungs not ready to support life.

Dr. Roschanak Mossabeb, the neonatal intensivist in the delivery room, and a physician assistant threaded a breathing tube — the size of a straw on a juice box — down the baby’s throat. A respiratory therapist began squeezing a bag by hand to force oxygen into the tiny lungs. Dr. Mossabeb also squirted through that breathing tube a drug, surfactant, to help the lungs open and close.

To survive at 24 weeks, a baby’s heart must beat more than 100 times per minute, but her pulse was below 60. So a nurse gave chest compressions. Imagine two fingertips pressing gently in rhythm. The team then ran a central line– as thin as the wire on an ear bud — into the baby’s umbilical vein. In flowed the drug Epinephrine, a stimulant. “We call this jumpstarting the heart,” said Dr. Mossabeb.

Deciding how long to continue aggressive life-saving measures with a premature baby requires immense judgment, and is perhaps the hardest thing a neonatologist does. Doctors want to save lives, but not prolong suffering. There are standards of care, and guidelines, but decisions must be made in the moment, and every circumstance is unique. Dr. Mossabeb continued for 12 minutes, she said, when the heart rate rose above 100.

Very often with babies born this prematurely, the tiny capillaries in their brains can’t tolerate the pressure of life support, and burst and bleed, resulting in brain damage. Blood vessels in the heart and lungs often rupture as well from the compressions or forced air.

Dr. Mossabeb had worked all night, and was scheduled to leave for vacation later that day.

“I was constantly thinking about her,” the doctor said. “I called in and they said she’s just honeymooning. Babies often do well for the first 24 hours and then show us what’s really going on.”

“I did not expect her to be here when I got back,” Dr. Mossabeb said.

Dr. Roschanak Mossabeb and Rey on the day before discharge.

Dr. Roschanak Mossabeb and Rey on the day before discharge.

But that was her conscious mind.

“I actually dreamed about her the very first night of vacation,” Dr. Mossabeb said. “That I was coming back and she was still on the patient board.”

Her mother named her Fatima Raeline, known among the team simply as Rey.

Rey was taken to Temple’s infant intensive care unit. More than 400 babies a year come through this 26-bed unit. Too often the conditions that put them in intensive care are the consequences of poverty, substance use disorder, neglect, violence and other health disparities that proliferate in the areas of Philadelphia surrounding the hospital.

Care of these babies falls into the hands, literally, of six doctors, five physician assistants, 40 nurses, and a handful of unit clerks and rotating respiratory therapists who work days, nights and weekends. They are joined by a social worker, Maria Sierra Ortiz, because securing a safe, loving home can be as challenging as saving a life.

The director of the unit, Dr. Heidi Taylor, went into the Peace Corps after college, and it was in South Africa, seeing the great need for medical care, she decided to become a doctor.

Dr. Taylor wears blue scrubs to work every day, and lets her personality emerge in her socks. “You know these scrubs are not the most attractive thing in the world,” she says. “But I like to have my socks. Yesterday I had hula dancers. Today I had fish.”

The next day she had red and blue beach balls. And orange camels the day after that.

With the smallest, sickest babies like Rey, doctors often fall first for their mothers, most of whom, regardless of their circumstances, come every day. Dr. Taylor, for instance, has given her heart recently to the mother wearing an ankle monitor because she was on parole for manslaughter (years ago she had been selling a gun to buy drugs when it accidentally fired, killing her own child); to the mother with HIV and HEP C who came alone, with no family or friends to support her; to the 14-year-old who hadn’t even realized she was pregnant and said to her father after her baby was born, “What will I do about my math test in the morning?”

These doctors and nurses want to give these mothers a healthy baby to take home, and so often do. “We want so badly for everything to be perfect,” says Dr. Taylor.

But sometimes they can’t. The baby will die or never come off a ventilator or suffer permanent brain injury.

“This is the problem with falling in love,” said Dr. Taylor.

After one particularly difficult morning, I asked Dr. Taylor how she comes back every day. Her answer, “somebody has to.”

Many of the doctors and nurses grow close.

“There’s very few people with whom you can really share this with because they have no perspective,” said Dr. Taylor. “It grinds you down. There’s no way around it.”

An intensive care unit and a baby nursery are at opposite ends of the spectrum of spaces that humans inhabit. Combining them on the third floor of Temple Hospital necessarily favored the medical, with monitors, beeps and a feeling of lives in the balance. There were rocking chairs, and letters of the alphabet painted on the far wall. On one pillar, stenciled in cursive, was this: “Every child is a story yet to be told.”

Rey lived in an incubator known as an isolette, about the same price as a Mercedes-Benz C 300 sedan and perhaps even more high-tech, carefully controlling light, heat and humidity.

Dr. Taylor introduced me to Rey one day.

She was 1 pound 13 ounces. “She’s not even tiny to us,” Dr. Taylor said. “That’s the crazy part.”

Dr. Taylor opened the door to the isolette and brushed the baby’s check. “Right, pumpkin?”

Rey’s skin was gelatinous, almost translucent, and could not regulate her body temperature yet, and she was at constant risk of dehydration. Babies this small in these first weeks are rarely held. They are fragile and too many things can go wrong. “Less is best,” said one nurse.

For the first several weeks, Rey had a breathing tube down her throat, a feeding tube in her stomach, and a central line, as thin as dental floss, in her leg carrying medicines and nutrition.

Doctors took blood so often to measure her body chemistry and organ functions that she needed repeated transfusions. Doctors constantly checked for infection, even at one point doing a spinal tap out of concern for meningitis.

Rey needed special formulas and vitamins and doctors had to be extremely careful how much to give her to avoid a condition known as necrotizing endocolitis — as bad as it sounds. Babies don’t develop the ability to suck until 34 weeks of gestation, so for at least 10 weeks nutrition would come through an IV or a feeding tube.

Through it all, Rey was without family. Her mother never visited.

Doctors on the unit were familiar with Rey’s mother, Sonia B., 39.

Ms. B had been in Temple University Hospital eight months earlier, on August 7 of 2018, delivering a baby boy at 25 weeks. Like Rey, he was also under two pounds at birth, and spent 67 days at Temple before being transferred to St. Christopher’s Hospital for Children.

Ms. B rarely visited her son at Temple. One time Dr. Taylor and the unit social worker, Sierra-Ortiz, asked police to bring her, and another time they sent an Uber, because doctors needed Ms. B’s signature to do procedures on her son. He is now in foster care.

Back in the hospital to deliver Rey, Ms. B talked with the social worker, Sierra-Ortiz, who said tears flowed. Ms. B told the social worker she was raised by a mother addicted to crack cocaine, and she had smoked it now herself on and off for nearly 20 years. Ms. B did not expect the hospital staff to understand her life or her decisions, Sierra-Ortiz said. Ms. B did agree to go into a rehab program, though the social worker had her doubts that Ms. B would follow through.

After giving birth to Rey, and recovering from her surgery, Ms. B did not enter rehab, and did not return to Temple to visit her daughter.

Robin Ringgold has been a nurse in the infant intensive care unit at Temple for 20 years.

Her heart goes out to babies with nobody else, no one to love them, sing to them, hold them, encourage them.

Nurse Robin Ringgold sharing stories about Rey.

Nurse Robin Ringgold sharing stories about Rey.

“I love all the babies in here,” said Ringgold, “but babies with moms that for whatever reason can’t cope, that drop off, I seem to get more attached to them.”

She also has a special place for the black females,” she said, “because they have to struggle in this world.” Ringgold is one herself, and was raised by a single mother, and she tells her own daughter, more so than her three sons, “You’ve got to be strong and independent.”

For these reasons, Ringgold’s heart went out to Rey.

She tried to fight it.

“You don’t want to get so attached where it can get heartbreaking, so you fight holding her and I did fight holding her,” Ringgold said. “You kind of step away. Then you say, `no she has to be held. She’s never been held.’”

Pretty soon, Ringgold was holding her every day. Soon she was telling everyone else in the unit how Rey liked to be held — upright, on the left side. “She likes to hear your heart,” Ringgold said.

Ringgold constantly talked to Rey as she rocked her.

“You’ve come so far, Rey Rey. You’re so pretty. You’re really loved. “You’re going to get a good family, Rey Rey. You can do this.”

Ringgold bought Rey a pink baby blanket, and swaddle sleeper, and stuffed animal to put in the isolette, and onesies and a few outfits. She bought her aloe cream so when Rey had a bath she could smell good. “We teach the moms when they come in how to give a bath,” Ringgold said. Rey had no mother around for nurses to teach, but at least she could smell good like the other babies.

Ringgold says working in the ICU is all about heart. She says she understands that some mothers weren’t loved themselves, and she can teach them how to sing to their babies, and read to them, and dress them. And she can care for the babies.

“This is my sanctuary,” she said.

I met Ms. B on a brutally hot day at a row house near 33rd and Norris Streets where she stays with the father of one of her nine children. It was 2 p.m. and we’d made an appointment, but she was asleep. She came down and decided we should do our interview nearby in Fairmount Park, and first I drove her across Lehigh avenue where “loosey cigarettes” are cheaper, two for a dollar, rather than 75 cents a piece at many other bodegas and storefront markets.

Sonia B. during an interview in Fairmount Park.

Sonia B. during an interview in Fairmount Park.

Ms. B said she splits her time now between this row house on Norris Street and an abandoned building north of Lehigh Avenue where she lives with the man she calls her husband and where she smokes crack cocaine.

When she wants to be off the drug, she stays with the father of one of her first children and his uncle, now friends. When she wants to get high, she goes back to the abandoned house.

We found a bench in Fairmount Park and had a very long talk as she smoked her cigarettes, and ate from a bag of candy she carried with her. She graduated from Martin Luther King high school, she said, and worked with the City Year program (a local version of Teach For America) for a year, and then went to Northampton Community College for a while, she said. She even dreamed of being a teacher.

When she was growing up, she said, her mother was addicted to crack. But Ms. B said she never smoked as a child or teenager, and she said her mother eventually stopped using. When Ms. B was 22, with two kids, she moved from Philadelphia to Harrisburg with her mother. In Harrisburg, she said, she went with her mother to a narcotics anonymous meeting, and there she met a man, J.J., who gave her heroin. She hated the heroin, she said, and wanted no part of a drug that required a needle in her beautiful arms. “That was not my twist,” she said. But after the heroin, she said, JJ gave her crack and she smoked it. “I tried crack cocaine and that was it,” she said. “It was off to the races. I was stuck on crack.”

She found herself back in Philadelphia, with four kids now, using crack daily, and a neighbor called the Department of Human Services, DHS. “I was getting high, and the neighbors didn’t like me, and they put DHS on me,” she said. She didn’t have much food in her house that day, she said. “I had lost my Access card and I was waiting for another to come,” she said The DHS visit, she said, prompted her to make a decision, to act. She handed off her four children to their fathers, her sister, and an uncle. Then she went into a rehab, believing her children were in good hands. Still, while she was in rehab, she said, DHS took supervision of her children. “That’s how this ball begins to roll,” she said.

“I fought for my kids at one point,” she said. “I did the court thing and I did the getting clean thing. I did the NA meetings. And the mental health evaluations. I did all that they were asking me to do. The parenting classes. The anger management. I did all that and I still didn’t get my children. So I don’t believe nothing they say. I believe that no matter how hard I fight or how hard I try they’re not going to give them back. So at this point in time I don’t even feel like taking myself through that. I just want to be left alone.”

“I never beat my kids,” she said. “I never hurt my kids. My kids never even seen me get high. But because you feel like I’m not a good mom, then you can just come and take my children. I don’t agree with that. I see other people who don’t get high and take worse care of their children and they still have their children. I just don’t understand.”

She continued having babies, she said, each time hoping this baby would be the one that would change her life, the baby she would bring home and raise herself.

“I thought with each pregnancy I’ll stop getting high,” she said. “I really meant that. This is going to be the baby that I’ll get clean.”

“I would stop and start,” she said of the crack. “One year clean. Two years clean. Three years clean, but I would always go back to crack cocaine. I don’t know why. Long story short, every kid I had they was just taking ’em. and I was getting tired of fighting for them. Then I got mad at God. Why you keep letting me have kids knowing that I’m addicted to drugs? I didn’t understand.”

At this point, she says, she will never get her children back, so there’s no point even trying. Several are being raised by their fathers, others in foster care or adopted. She knows where all of them are but one, she said, whom she had down South and “is lost in the wind.”

“I already know they hate me,” she said of her older children. “I feel like they do, and the others would once they get old enough to realize. And maybe it’s because I hate myself.”

Her first seven children were born full term, she said, only the last two came so prematurely. Maybe the crack use caused the early delivery. Cocaine is a well-known risk factor for causing premature birth. Maybe getting older was a factor. Maybe it was because the pregnancies were so close together.

But after Rey was born, after the caesarean section, she asked doctors at Temple to tie her fallopian tubes. There will be no 10th baby.

“I was `oh, no, enough of this’” she said. She was done with her dream that she one day might change. “I told them to tie my tubes, and give them to the orca whales.

Why the orca whales, I asked?

“Those are the most dangerous whales,” she said. “And I know they won’t give them back.”

I asked Ms. B how she survives day to day.

“You’d be surprised on trash days what you can find,” she said. “I sell stuff. I clean houses. Sometimes I’m a prostitute. I don’t have to do that too often. Some people might ask me to run errands.”

In a way she said she liked the challenge of raising money. It gave her life purpose.

She said her mother hasn’t smoked crack in nearly 20 years.

Her brother, she said, was murdered on April 1, 2005. He didn’t do drugs, she said, but was hanging with the wrong people, caught in a fight between rival gangs, and shot in the back of the head.

I asked if that trauma had something to do with her turning to crack.

“Nah,” she said.

I asked her why she never visited Rey in the hospital.

“I just want to distance myself from all of it,” she said. “I think I’m trying to forget. I don’t want to go up there holding them and rocking them and singing to them, knowing at the end of the day you’re going to take them anyway. It’s the guilt, the guilt I put myself through.”

As our interview ended, she cried.

Listen,” she said. “I’ve lived both sides. I’ve lived clean and I’ve lived this way. And I know when I was clean life was much easier. But this way helps you forget about your pain. After a while, even getting high doesn’t help you escape. There’s been times I’ve been high as a kite and I’m still angry with myself, understanding I don’t have my children.”

After nearly 100 days in the hospital, on July 16, little Rey went home. She was breathing on her own. Taking a bottle. She was 6.3 pounds, and still two weeks shy of her due date.

Picture of Rey on the day she went home tacked to bulletin board in IICU office.

Picture of Rey on the day she went home tacked to bulletin board in IICU office.

“She’s kind of a miracle,” said Dr. Mossabeb, who, fittingly, was working on the day of discharge. “She needs to end up on Oprah or Ellen.”

“She’s the ultimate fighter,” said Dr. Mossabeb. “She deserves to be in a loving environment.”

Home was with a foster mom, Shakara Hickman. Ms. Hickman, 32, has 12 children _ six adopted, two foster, and four biological.

I went to visit her just a few days after she brought Rey home from the hospital. She lived in North Philadelphia, not far from Ms. B, but was soon moving to a bigger house in the Olney neighborhood.

“I had my share of traumas when I was young,” said Ms. Hickman, including sexual assault. But she was able to channel her pain into something good, she said, into becoming a mother to children in need.

“When you been through what I been through,” she said, “you understand what is needed. I keep myself motivated by understanding that in a blink of an eye, this could have been me.”

Rey with foster mother Shakara Hickman

Rey with foster mother Shakara Hickman

“I never say this is my foster child, this is my adopted child, this is my real child,” she added. “They’re just my children.”

Ms. Hickman works fulltime at crisis recovery center on Henry Avenue and was taking classes part time at West Chester University.

Some of her foster children and adopted children came to her as teenagers and are in their 20s now, she said. Seven children live with her, including Rey.

Rey is the second child of Sonia B. to come to Ms. Hickman. Seven years ago, Ms. Hickman brought another of Ms. B’s babies home from the hospital, and adopted her at age five.

Ms. Hickman would bring that little girl to the foster agency, where Ms. B. would visit, and the two women got to know each other.

“The first time I met her she said, `you are keeping my baby dirty,’ ” Ms. Hickman recalled. “Another time, `you lost her earrings.’ She would just find anything and everything to complain about….”

Ms. Hickman said she explained to Ms. B.: “I understand you’re hurt because you don’t have her. I’m not here to replace you as a mother. I’m here to care for your child until you are able to. And in the event that you’re not able to, I can guarantee you that she’ll be ok.”

“She cried,” Ms. Hickman added. “And we hugged. I told her, `I don’t want you to think I look down on you. We are all fighting our demons.’ ”

“I’ve cooked, brought her food, bought her clothes, transpasses, tokens,” said Ms. Hickman. “I’ve been good to her.”

Both women say Ms. Hickman will be able to adopt Rey, perhaps as early as in six months.

Rey in her new foster home after two weeks.

Rey in her new foster home after two weeks.

“We’ve gotten so close that we are family now,” said Ms. B. that day in the park.

Ms. Hickman knows Rey’s future could be very challenging. More than half of babies born at 24 weeks, in circumstances similar to Rey’s, do not survive or display moderate to severe neurological impairments by age 2, according to Dr. Taylor. What deficits will emerge are unclear.

And the first few months weren’t easy. After a month at home, Rey was admitted to St. Christopher’s Hospital for Children for a month with an infection in her lungs. Her lungs will always be at risk, said Dr. Taylor. Rey also failed an early hearing test.

She is now back home with Ms. Hickman. She goes to a medical day care, the Lawrence House, every weekday, and aides come to help on weekends.

Rey and Shakara.

Rey and Shakara.

“We also have physical therapy coming,” said Ms. Hickman. “She just learned how to clap her hands. You have to remember, she’s still only the equivalent of three months old.”

Ms. Hickman says she writes out a promise to all her children, and this is how she ended hers to Rey:

I can’t guarantee you a perfect life but I promise my best to make the best out of it. You are now and will forever be my baby, My QUEEN. Mommy loves you forever. You are the last and final beat to my ♥

Dr. Taylor and her colleagues are happy Rey has a home. If Ms. B. had agreed from the first day in the hospital to give up Rey for adoption, social services could have brought in Ms. Hickman or another adoptive family right away to begin bonding with the child. Since Ms. B. did not relinquish her parental rights, the baby went into foster care. When this scenario happens, home placement isn’t initiated until closer to discharge.

Dr. Taylor and her colleagues understand that so many problems here are societal, and changes far beyond the infant intensive care unit at Temple University Hospital will need to occur to give these babies a better chance in life.

They do their best to check all judgement at the door, to open their hearts to the babies and families, and to provide superior care. And on really good days, when Dr. Taylor feels like celebrating, she might wear her socks with the champagne glasses.

Michael Vitez, winner of the 1997 Pulitzer Prize for Explanatory Journalism at The Philadelphia Inquirer, is the director of narrative medicine at the Lewis Katz School of Medicine at Temple University.