This article first appeared in the St. Louis Beacon, Nov. 22, 2012 - Mia Malcolm was six months pregnant when she gave birth to her son, Gavin, in April 2009. He weighed only one and a half pounds.
When babies are born prematurely, they weigh very little, their organs only beginning to develop. With tiny lungs, and tiny everything, various health complications loom. Gavin began his life in the Newborn Intensive Care Unit (NICU, pronounced with two syllables: nic-u) at St. Louis Children's Hospital. After seven months, he was supposed to go home.
Malcolm, then 25, was excited — all that was left was one last surgery. But after the intubation tube was out, Gavin's throat swelled and closed. Malcolm watched as her son flatlined and the room filled with doctors yelling "he's coding," trying to jam a tube down his throat. Someone walked in holding the smallest paddles she'd ever seen. If they jolted her baby, she thought she'd die right then and there. Someone attempted to remove her from the room, but she wouldn't budge. The doctors got the tube in.
“That’s how quickly things change. Up until the day that we left. I didn’t believe that we were gone and out of here, until we were in the car,“ Malcolm said.
The premature birth rate in the city of St. Louis, at almost 20 percent, is significantly higher than the national rate of 11.7 percent, according to March of Dimes, an organization dedicated to improving birth outcomes. From 2006-2008, the infant mortality rate — the percentage of babies who die before their first birthday — was 10.4 percent in St. Louis and 6.7 percent in the country as a whole.
One reason for the high mortality rate is a lack of awareness about the need for prenatal and preconception care, said Kendra Copanas, executive director of the Maternal, Child and Family Health Coalition (MCFH). In St. Louis, the knowledge gap tends to be most severe in African-American neighborhoods, where poor residents often have less access to health care, cutting them off from vital information.
Malcolm, who lives in University City, had private health insurance through her job. Gavin's bill amounted to $2 million — for just the first two months. That piece of paper now hangs in Malcolm's apartment, framed, to show her son one day. After the charges for Gavin's hospital stay reached the insurance cap, Malcolm enrolled him in Medicaid, for which he automatically qualified. Even with private insurance and Medicaid coverage, Malcolm has paid about $20,000 out of pocket.
Not long ago, a baby born after only 24 weeks wasn't viable, said Lori Goser, the NICU family support specialist at the Children's hospital. Thanks to research funded by March of Dimes, treatments like surfactant therapy reduce respiratory distress. Now, a baby as premature as Gavin has a pretty good chance of survival.
Copanas characterizes NICUs as the front line of caring for babies who would have otherwise died. At any one time, the NICU at Children's hospital accommodates 50 to 80 babies, some of them so small a ring could fit around one of their legs. The unit features a combination of private rooms and open bay areas, anchored by transparent chambers containing the miniature squirming babies.
Out of nowhere
Twenty-four weeks into her pregnancy, Malcolm had been on bed rest but doctors told her she was fine, so she got off. The next day she felt a pain, similar to kidney stones, which she hoped she wouldn't have again — not at a time like this. She went to the ER and learned she was three centimeters dialated, which usually happens eight months into pregnancy.
Gavin was born the next day — Easter Sunday.
Besides being scary, it was mostly weird and surreal, Malcolm recalled. The timing was similar to the last time she'd been pregnant, which resulted in a stillbirth. There were all these people in the delivery room she didn't know and her baby was very, very tiny. His lungs were so small he couldn't even cry.
"It’s weird because you don’t get that moment that moms have, when the baby’s calm and you hear it cry, get to hold it. There was none of that."
Before the nurses took Gavin away, she was able to reach out and touch him for a second. She didn't know if it would be the last time she'd see him.
In the NICU, primary treatment is focused on maintaining the baby's body systems, constantly monitoring vital signs. After the critical point has passed, the focus shifts to feeding and growing. Doctors and nurses are supplemented by nutritionists, lactation specialists and social workers.
Gavin was alive, but Malcolm didn't know — she still doesn't know — the cause of her early delivery. According to March of Dimes, in most cases the causes of premature births are still unknown. Every day Malcolm would rack her brain trying to figure out where things went wrong, retracing her pregnancy. She didn't smoke, didn't drink. She wasn't an unhealthy person. She didn't have any preemies in her family. Yet even without a reason, her daily, even momentary thoughts became saturated with self-blame.
"On his good days you can't even be happy because you don’t know how long those good days will last," she said. "And then on his bad days, its like, I did this to him, I was supposed to keep him safe. I'm his mom."
The new normal
Gavin lived in the NICU for the first nine months of his life —the average stay is around two to three months. Malcolm stayed with him every single day, except for a 10-day period when she got sick from the stress. Gavin's dad, Larryn Porter, came at night after work, and her mom visited on weekends.
Malcolm and the other mothers in the NICU felt isolated at first. Malcolm armed herself with a notebook and pen to write down and then try to understand the barrage of medical jargon she was hearing.
As the NICU family support specialist, it's Goser's job to help. While doctors and nurses take care of the babies, she takes care of the families, Goser said. Her salary is paid for by March of Dimes. Helping Goser is a vast network of 100 volunteers, many of whom are graduate-moms of the NICU.
Goser and the volunteers sponsor activities like lunches, scrapbooking, photography, and holidays. To maintain their own health and sanity, families need to be able to step away from the bedside for a little bit, Goser said.
Malcolm initially refused to separate from Gavin, afraid if she left even for one minute, something bad would happen to him. She acquiesed only when Goser showed her the activities room was right down the hall. Malcolm became a dedicated scrapbooker, measuring her son's progress in one month birthdays. When hospital staff photographed her holding Gavin for Mother's Day, Malcolm was grateful that there were no tubes in the picture — just a mother and her son.
"They give you these normal moments. Not having to feel like I'm an alien mom because my baby is here and not outside," she said.
Mothers have the chance to meet with other mothers who are going through the same things — things it's hard for any outsider, no matter how well meaning, to understand. One of the mothers even became Gavin's godmother.
But for all the hospital could do, the anxiety could only be quelled, not removed, Malcolm said. When Gavin coded it was a grim reminder of what was at stake.
Going home
Malcolm couldn't sleep for the first week Gavin was home. She constantly checked his monitor. The transition was scary, she said. A home nurse was scheduled to arrive after a month because Gavin went home with so much equipment.
When you have a kid with special needs, you need to learn to adapt, Malcolm said. Getting groceries is a lot more difficult with a child hooked up to a feeding tube. With the potential for so much to go wrong, dropping him off at somebody's house is never an option.
There are no colds — there is pneumonia.
"I would love for Gavin to have a cold. I would give anything in this world for Gavin to just have a cold," Malcolm said. "He’s had pneumonia 16 times... It goes right to his lungs and we’re in the ER. Every time."
Gavin is now almost 4.
"When your kid is a pound and a half, you just don’t think about 4 years old. It’s crazy to me. I have pictures of him, all over my apartment, of this little one pound baby."
There are a slew of issues that stem from Gavin's prematurity and lying around for nine months, not doing normal baby things. Strictly Pediatrics Center, a medical day care in Maryland Heights, has a nursing program for children with medical or developmental needs. Gavin has a busy schedule: He's in physical, occupational and speech therapy. He had a tracheotomy so he has some trouble talking. He can say about 15 words, but for now, he communicates mostly through sign language. Busy schedule notwithstanding, he's very popular — a social butterfly, Malcolm said.
Besides some health complications, Gavin is a typical kid. He loves kicking and throwing balls. He's obsessed with cars and Clifford. He gets impatient: If someone doesn't "hear" one of his signs, he'll "yell" the sign, gesturing with more vigor. He likes being outside, navigating swings and slides at playgrounds, wanting to go down head first.
With premature babies, recovery is often a waiting game, with their bodies hopefully catching up to their ages. Which problems will endure are hard to predict. There is no doubt Gavin will have asthma for the rest of his life, but after everything he's been through, what's a little asthma? Malcolm asks.
"I'm just along for the ride. It's his world. I'm just hanging out. I caught a ride on the Gavin train," said Malcolm in her characteristically light tone.
"You gotta learn to love it, you know what I mean? When I was a kid, (I thought) 'oh, I'm going to get married and have babies and be a mom', you don’t think 'oh, I'm gonna have a sick baby and he’s gonna be in the NICU.' You don’t think that but it is what it is. That’s our motto: as long as Gavin’s happy, we’re happy. It’s not happy life, happy life. It’s happy baby, happy life. If Gavin’s happy, we’re in."
Addressing racial disparities
The 27th Ward in St. Louis, which is 93 percent African-American, is one of the most vulnerable in the city. It includes the neighborhoods of Baden, North Point, and Walnut Park East and West. Infant mortality there is 14.57 percent, according to the Missouri Department of Health and Senior Services. That's double the national rate and four percentage points higher than the city overall.
Copanas learned from surveying the community that women in St. Louis' poor neighborhoods may not realize they should be seeing a doctor as soon as they're pregnant. Moreover, they are less likely to see a doctor regularly before pregnancy. Preconception care contributes to heathier babies. Low-income women are automatically eligible for Medicaid during pregnancy but not necessarily before or after. Since roughly 50 percent of pregnancies are unplanned, a host of anxieties often leads to a delayed first visit, augmenting the possibility of health problems.
TRIUMPH is a new MCFH initiative targeting the 27th Ward, building a base of community champions to spread the word about the importance of preconception care. TRIUMPH provides vouchers to pregnant women for a free first visit to a local community health center. Otherwise, for someone without insurance, that first visit doesn't always get reimbursed.
Being under the care of a doctor before and during pregnancy doesn't assure a healthy, full-term baby. But it improves the chances. Malcolm was insured, allowing her to consult with her doctors without hesitation.
"When you don't have health insurance before and after pregnancy, it's a real missed opportunity to improve the chances for a healthy baby," said Copanas.
Since 2001, MCFH has led Healthy Start, an intensive program of home visits and prenatal care that aims to reduce the racial disparity in infant deaths. Nurses (through a partnership with Nurses for Newborns) and community outreach moms support each Healthy Start mother from the beginning of pregnancy until up to two years after the birth. The program provides mothers with access to medical screenings and cultivates a peer group to buffer against feelings of isolation — just like in the NICU.
In the program's inaugural four years, participating mothers had premature births 30 percent less often than mothers living in the same area who weren't enrolled. Healthy Start enrolls about 100 women at a time, but through a partnership with Beyond Housing, the program will expand into the area of the Normandy School District, increasing its reach to another 75 mothers-to-be. Copanas believes it would be wise for more of the region to invest in home visitations.
Jason Schwartzman is a Beacon intern.