The Preemie Prism: As her twins enter high school, a mom reflects on their perilous journey
Gallery
As her twins enter high school, a grateful mom reflects on how their perilous journey shaped them all.
By Tracey A. Reeves
Sunday, August 15, 2010
The flashbacks don't come as frequently as they used to, not since my twin boys became teenagers, shot up a few inches and started sounding like men. But the memories still rush back at the oddest times, such as the evening last fall when I was sitting in the stands at one of their football games. It was a home game on one of the nicest artificial turf fields in Howard County. Our team, the Columbia Ravens, had already scored. Now, the spectators were on their feet again.
"Get him! Get him," they yelled.
I had been looking down at my BlackBerry, but hearing the excitement, I glanced up in time to see the football sail through the air and into the hands of an opposing player. He was wide open, about to make a run for the end zone. Then, out of what seemed like nowhere, one of our players broke free from the crowded line of scrimmage and sprinted to the ball carrier, tackling him to the ground.
I blinked and adjusted my eyeglasses. "Did I just see what I thought I saw?" I whispered to my husband, who was sitting next to me. "Was that Cameron?"
"Yep," he said, staring at the field. He was thinking what I was thinking. Our son Cameron, who was so small at birth that he could fit into the palms of our hands, had just taken down a pretty good player.
I watched as Cameron popped off the downed player and strutted to his teammates, his slight but muscled body disappearing into the jumbled huddle. My mind flashed back to the neonatal intensive care unit and the doctors and nurses hovering over him.
"He's a fighter," I remember a doctor saying to me. "But he's very small. The first 24 hours will tell how he'll do. ..."
***
I'm sometimes surprised -- even shocked -- when Cameron and his brother, Matthew, now 14, shine on the gridiron, in the classroom or in other ordinary achievements. It's not that I have low expectations of my children, but I can never forget their precarious start in life. When they were born nearly 11 weeks before their due date in 1996, my husband, Benjamin Lumpkin, and I weren't even sure our boys would make it, let alone be able to play sports, take up the violin or sing in their school chorus. For the parents of a preemie -- a baby born before 37 weeks gestation -- the experience can range from awful (the baby's death) to blessed (survival with few, if any, lasting medical issues).
These days, more women are giving birth to preemies, partly because of the increased use of fertility drugs, which tend to result in multiple births. Many of these babies spend their first days in the neonatal intensive care unit -- the NICU, also the name and focus of a new television series that debuted last month on the Discovery Health Channel.
According to the National Center for Health Statistics, preterm birth rates rose by more than one-third from the early 1980s until 2006, when they hit 12.8 percent. In 2008, 12.3 percent of babies were born premature. The medical costs are staggering, more than $26 billion in 2005, according to a report by the March of Dimes, a leader in the effort to improve the health of babies. Because of advances in science and medicine, the chances of survival for preemies, even those born before 24 weeks, are better than ever, says Alan Fleischman, medical director for the March of Dimes. But many of these children suffer developmental and medical problems that can be temporary or life-long.
This is the preemie prism through which I've viewed my boys' accomplishments. When I cheer at their football games, I do so not just because they make a key tackle but because, against scary odds, they can walk and run. When I applaud at their school concerts, I do it not just because they perform beautifully, but because Cameron and Matthew are up there with the rest of the kids. And this month, when my sons go off to high school, I'm sure I will shed a few tears, not just because I'm proud they've reached this milestone, but because 14 years ago, I feared this time might not come.
It was Jan. 11, four days into what became known as the Blizzard of 1996, and I was undergoing a sonogram. The warmth of my obstetrician's Rockville office was a stark contrast to the low temperatures and snow outside. As the doctor spread cold gel over my abdomen, I briefly turned away from the machine. "Please, Lord," I whispered, "let this pregnancy be the real thing."
After a few minutes, my doctor blurted: "Mrs. Lumpkin, do you have twins in your family?" I thought about my cousins, Anthony and Shauna, now in their late 20s. "Yes," I answered. "Why?" I lifted my upper body and turned to look at the machine. The nurse was smiling.
"From what I'm seeing here, it looks like you've got a set of twins," the doctor said.
Feeling a sudden mix of giddiness and shock, I fell back on the table. Several months earlier, an ectopic pregnancy had damaged one of my fallopian tubes, prompting my Greenbelt doctor to refer my husband and me to a Rockville practice that specialized in treating infertility. In late fall 1995, we visited the practice and learned about the options available, including oral drugs, hormone injections, in-vitro fertilization and intrauterine insemination -- all more than I wanted to try and more than we could afford. The doctor suggested we return in January to discuss the next step, but before our next appointment, I began experiencing abdominal cramping and bleeding, prompting my visit to the doctor. Now, I was seeing two fuzzy images on the sonogram machine.
At first, my pregnancy seemed like a dream, except for occasional morning sickness. Then, into my second trimester, my doctors noticed that one of the twins, Baby A, was not growing at the rate of Baby B. I was referred to a perinatologist at Georgetown University Hospital, who began tracking the babies' sizes and urged me to take it easy. He was concerned about Baby A -- "the runt," he called him. If the size discrepancy continued, he might have to put me on bed rest. I followed his orders.
Then a 35-year-old reporter for Knight Ridder newspapers, I was covering a news conference in Washington on June 12 when I felt a subtle pop in my lower abdomen and a seep of warm liquid. I eased out of the room, made my way home to Bowie and called my obstetrician. Get to the hospital right away, he told me. By the time my husband's car pulled up to Shady Grove Adventist, I was sitting in a puddle of amniotic fluid. I was whisked up to the labor and delivery floor, where my doctors and nurses were waiting. My mother and sister were on their way. So were the twins, at just 28 weeks of gestation.
***
My doctors immediately began trying to suppress the contractions by giving me intravenous doses of magnesium sulfate and shots of Terbutaline, an asthma medication also used to stop preterm labor. As I lay there, my obstetrician, Jonathan Elias, stood next to my bed and gave Ben and me The Speech. "We don't want to alarm you, but this is serious," Elias began. I trusted him, but I was scared.
He said he was fairly certain the twins could survive. But even under the best circumstances, the medical team wasn't sure what issues the infants might face once they were born: possible breathing, vision or hearing problems; or bleeding in the brain, which occurs in the early days of some preterm babies, especially those weighing less than 3 pounds at birth. That dangerous condition could lead to neurological problems and interfere with motor coordination. The smaller the baby, the higher the risk of brain bleeds, he said. The risks were even greater for multiples, because the babies tend to be smaller. The severity of my situation hit me, and I began to sob. Ben stood silently next to my bed and rubbed my shoulder.
That night when he left, I lay awake, wondering what would become of my babies. What if they suffered brain damage? Or, God forbid, did not survive? A calm person by nature, I tried to assure myself: Whatever God gave me, I would happily take.
My doctor put me on strict bed rest. I couldn't get up even to shower or use the toilet. The anti-contraction medicines made me tired and queasy, but I read and watched the Summer Olympics on television. After a few days, my doctors allowed me to get out of bed sparingly. But early on the fourth morning, I was walking gingerly to the bathroom in my room when a sudden pain, like monster menstrual cramps, hit me. I tiptoed back to bed and called the nurse. I learned later from my medical records that I was already seven centimeters dilated, one of the babies was in a breech position, and his feet were passing through my cervix.
To decrease the risk of complications, my doctor ordered an emergency Caesarean section, and I called my husband, who was sleeping at home. The commotion around me seemed surreal. Hospital workers wheeled me into the operating room, and the anesthesiologist began administering numbing medicine. All I could think of was The Speech.
Ben had yet to arrive, but the babies had to come out, the doctors said. My entire body trembled. Sensing my fear, the anesthesiologist wrapped his arms around my shoulders from behind. "It's going to be okay," he said.
"Please stay with me," I whispered.
Every face I turned to in the operating room looked worried. In my medically induced haze, I could feel the doctors tugging at my belly and then ... "Mrs. Lumpkin, here's Baby A," I heard a voice say as someone held the tiny newborn to my face. This was not the cute, chubby baby I had imagined. At 2 pounds, 5 ounces, he resembled a scrawny bird.
It was 3:16 a.m. A minute later, the voice announced: "Mrs. Lumpkin, here's Baby B." He was plumper at 3 pounds, 5 ounces. Both boys were limp, wrinkly and covered with fine black hair, known as lanugo, which all fetuses develop but shed at around 33 weeks of gestation. I waited for them to cry but didn't hear a sound before they were whisked to the NICU.
Through the commotion, I heard someone mention the babies' shared placenta, suggesting that the boys were probably identical twins. The perinatologist was concerned they may have suffered twin-to-twin transfusion syndrome in utero, a dangerous condition in which blood supply between multiple fetuses (usually identical twins) is disproportionate.
I drifted off to sleep. When I woke up, Ben was standing beside me with pictures the NICU staff had taken of our tiny boys. My doctor came in with an update: The babies were breathing on their own -- a very good sign. But their trajectory would depend on how they fared in the early days. Again, I started to cry. I had just given birth to my children, and I couldn't even hold them. I looked up at Ben, who was trying not to look worried.
"Happy Father's Day," I said.
***
The sounds struck me first -- the constant beeps and alarms signaling that a baby had stopped breathing, and the whooshing of machines pumping oxygen into tiny bodies. The space was a maze of isolettes: small, clear, box-shaped cribs, where sick babies lay until they were healthy enough to leave.
Despite their low birth weights, tests showed my boys had no brain bleeds or other significant problems. But they sometimes forgot to breathe and had been hooked to the beeping, swooshing machines. The alarm would alert the medical staff to touch or rock them gently to stimulate their breathing. Both boys also were exhibiting heart rate problems and, because they had not yet developed the sucking reflex, they had to be fed through a tube that snaked through their noses to their stomachs.
I walked slowly toward the boys. We'd named Baby A -- the one the doctor had called the "runt" -- Cameron; Baby B was Matthew. They were lying on their backs in only diapers, which swallowed them. They were not well enough for me to hold. And so, I just stood there, staring at their tiny bodies. My heart filled with agonizing guilt: How did this happen? What did I do to cause it?
Three days after the boys were born, I was discharged, but I felt only sadness, leaving without them. The NICU nurses urged me to allow myself to begin healing before returning to the hospital. Two days later, though, I was back, studying the staff's every move, preparing to take over caring for the boys. I taped a wedding photo of Ben and me on each of their isolettes. Eight days passed before I could feed Matthew with a bottle -- a combination of breast milk and formula to increase the calories -- and a few days more for Cameron. Nearly a month after their birth, I started breastfeeding them. I celebrated when they gained an ounce and stressed when they lost one.
Some days, I forgot to eat. Chores piled up at home, and the postman stopped delivering our mail because the box was too full. One month, I forgot to pay the mortgage. I wanted my babies home, and the guilt lingered. The boys were progressing slowly, but both had trouble keeping down their milk, which interfered with their weight gain.
As excited as I was to get to the hospital each day, I felt lonely and depressed until one day a new mom named Sally Glick approached and told me that she also had tacked a photo of herself and her husband on her son's isolette. Her son Robert, born prematurely because of her preeclampsia (pregnancy-induced hypertension) weighed 3 pounds, 9 ounces. Though he was born bigger and later than my boys, Robert had suffered more problems, including a brain bleed, apnea and a hole in his heart, which eventually closed with medication. He also needed oxygen therapy to help his lungs mature.
Sally and I began to schedule our visits to the hospital around the same time. We spent hours rocking, feeding and reading to our babies. Neither of us could imagine then that our preemie journeys were just beginning.
***
Matthew came home first, on July 16, exactly a month to the day after he was born. He weighed a little over four pounds. With Cameron still in the NICU, the staff knew Ben and I were in no mood to celebrate. There were no flowers or balloons, just long hugs and tearful goodbyes. As I walked out of the hospital, I looked over my shoulder in the direction of the NICU and whispered: "'Bye, Cameron. We'll be back tomorrow."
After two months in the NICU, Cameron finally made it to four pounds and joined us at home. For the first time, I felt like a "real" mother, flitting around the house, caring for my boys. Ben and I charted each feeding, noting how much the boys drank and when.
And there were still medical issues. Before his first birthday, Cameron landed in the hospital several times, including once for surgery at Georgetown Hospital to correct a birth defect in which his urinary opening was abnormally located.
Matthew fared better, except for a worrisome heart murmur, and like his brother, a tendency to throw up almost everything he ate.
The boys held their heads up, crawled and walked later than many babies their age. Cameron almost always followed Matthew developmentally by at least a couple of months. At the pediatrician's office, I stressed out when I saw other 2-year-olds talking in sentences; my boys were just beginning to string together words. My boys were smaller and slower because they were preemies, I explained to other parents. When the boys entered preschool at age 3, I made sure to tell the teachers about their history. If they didn't seem to be measuring up to the other kids in class, I reasoned that it was because they were preemies. If they caught a bad cold or vomited their meals, I blamed it on their prematurity. If they tried to force the square peg into a round hole or had trouble staying in the lines when they colored simple shapes, I explained that they did it because they were premature. Even when they excelled, I attributed it to their fight to overcome their prematurity.
One day, their preschool teacher pulled me aside and told me that Cameron was struggling to hold his crayons and other small objects, and when he did, he seemed to tire before he could even complete his pictures. Matthew was doing better, but even he was on the lower end of the "normal" range, she said. The pediatrician told us Cameron was exhibiting signs of fine motor problems, almost certainly a result of his premature birth. We were referred to Children's National Medical Center in Washington, where Cameron was assigned an occupational therapist. Three times a week for three years, I slipped out of work to take Cameron to therapy, lots of gripping small objects, shoe-tying, zipping and unzipping and playing the piano, all designed to strengthen his hands and fingers.
With the therapist's guidance, I bought jewelry-making kits that required Cameron to slip tiny beads through strings, and spongy balls that forced him to squeeze and release his hands. In time, his coloring improved. So did his sketching. He started to draw simple pictures and then more detailed ones without tiring. Soon, I was buying drawing tablets and colored pencils and paints. My father gave Cameron an old wooden easel, which he used one day to draw me a bowl of fruit. Later, in elementary school, his art would be chosen for display at a law office and at the local mall in Columbia, the community where we now live.
I was so happy with Cameron's progress that I replicated my approach with Matthew. My mommy instinct told me that the more I worked with the boys and exposed them to books, music, toys and sports, the more I could help deflect, or at least minimize, any developmental issues. Soon, both were reading and writing legibly, and it was becoming more difficult to notice delays in Cameron. In fifth grade, after completing a book report on Frederick Douglass, Matthew one day declared he wanted to play the violin. I rushed to buy one.
"That was the first time I heard of a black man playing the violin," he would tell me later. "I thought if he could play it, so can I."
For the first time, I was allowing myself to think that maybe the boys were growing out of the preemie factor. Some medical issues lingered, but they paled, compared with what Sally was going through. She had brought her firstborn home not knowing that his prematurity would manifest itself in eating problems, low muscle tone, and even tics and speech issues. Robert, who also will enter high school this month, is slow to process information and struggles with tasks that require him to use his fine and large motor skills. Because of his speech delays, it is difficult to understand him when he talks.
One recent afternoon, Sally and I sit in my family room and reminisce. Both of us recall hearing in the NICU that, according to long-held statistics, black girls generally fare the best of all premature infants, followed by white girls, black boys, and then white boys.
"Do you think your boys did better than Robert because of this?" Sally, who is white, asks about my boys, who are African American.
"I don't know," I say.
I tell her about my conversation with March of Dimes medical director Fleischman, who says that preemies have their own trajectories and can suffer a host of complications. "What we don't know is what protects some from these insults and not others," he says.
For Robert, high school will be an extension of middle school, says Sally, and college will likely be community college -- maybe. "I'm sorry," she says, now crying. "Robert is a good, kind kid. I just hope that as he gets older and goes out on his own, people will see in him what we see in him."
***
One Saturday afternoon, the boys are working on a science project, building a 3-D model of an atom using Model Magic clay, barbecue skewers and Styrofoam. Each has sculpted an impressive atom of protons, neutrons and electrons. But Cameron's clay protons and neutrons keep popping off. My mind flashes back to the days when I hoarded Play-Doh for him to play with so he could strengthen his fingers and hands. With the boys out of earshot, I whisper to Ben that maybe Cameron's clay balls are not sticking because he lacks the strength in his fingers to secure them. Ben throws me a look as if I am crazy.
I think back to a conversation with a neighbor a few years ago. We were chatting about our kids when I brought up Cameron's schoolwork and my fear that his prematurity might again be stunting his progress. By then, the boys were in the fourth or fifth grade.
"Tracey!" my friend said, practically yelling at me. "They're not preemies anymore!"
"What?" I replied.
"They're not preemies anymore!" she repeated. "They're fine now. You have to stop blaming everything on their premature birth."
I felt as though someone had finally knocked some sense into me.
"In mothers' eyes, preemie babies will always be preemie babies," Fleisch-man later told me. "But it is true that at some point, many of these children outgrow their deficits and no longer act like preemies and so should not be treated like preemies."
I've come to realize that for me, the preemie journey represented a safe place -- a place where for good or bad, I had a built-in explanation if my boys weren't thriving. These days, though, if the boys fail to complete a school assignment, earn a poor grade or neglect to turn in their homework, I'm more likely to chalk it up to teenage wishy-washiness or laziness. And I no longer feel obligated to let everyone new in their lives know they were preemies.
As I look ahead to high school and beyond, I'm beginning to see my boys through a new pair of lenses. And I love what I see: no longer the fragile preemies they were, but the vibrant young men they are becoming.
Tracey A. Reeves, a former reporter and editor for The Washington Post, is director of news and information at Johns Hopkins University. She can be reached at wpmagazine@washpost.com.
