A version of this article originally appeared in Pregnancy Magazine
Born Too Soon
By Jennifer Margulis
When Devon Allen’s son, Owen, was eight weeks old he was disconnected from life support machines for the first time. The Allens dressed their tiny baby in green knit pants and a sweater with red cuffs and a white snowman on it. Too small for baby clothes, Owen wore an outfit that came from a doll. “My mom cut the back of the sweater and put on Velcro so he could wear it,” recalls Allen.
It was a difficult Christmas. Four weeks earlier, Owen’s twin brother, Dermot, died. Although the doctors mentioned to Allen, 28 years old at the time, that she was at a higher risk of preterm labor because she was carrying twins, no one expected the babies so soon. “The doctors kept saying, ‘oh you’re at higher risk,’ but in the same breath they’d say, ‘maybe you’ll have Christmas babies,’” Allen remembers. Instead, Allen found herself in the hospital in full-blown labor, dilated to six centimeters, in October. She was only 25 weeks pregnant. The twins were born well before Halloween, Owen weighing in at one pound 10 ounces, Dermot at two pounds two ounces.
Allen, a Kindergarten teacher in Chicago, blamed herself. “When something like this happens to you, the mom typically looks back and says, ‘what did I do wrong?’” Allen says. “It’s so clichéd to say not to blame yourself but there’s no way you don’t. I knew deep down it wasn’t my fault, but you just question yourself.”
According to the March of Dimes, every day approximately 1,300 babies in America are born prematurely, or one out of every eight children, totaling almost 500,000 babies a year. “It’s the largest preventable cause of neonatal death,” says Dr. Durlin Hickok, M.D., Medical Director for Adeza Biomedical—a company based in Sunnyvale, CA, that has developed a test to identify women at risk for preterm labor, “the only other category is birth defects.” Disturbingly, the number of babies born prematurely is going up in the United States. “The incident of preterm birth was 12.1% in 2002, which is up 27% from 1982,” says Dr. Siobhan Dolan, MD, the Associate Medical Director at the March of Dimes and an Assistant Professor of Obstetrics and Gynecology and Women’s Health at the Albert Einstein College of Medicine in New York. “The rate is high and it’s rising. It’s going in the wrong direction.”
Diagnosed with an incompetent cervix, Allen was given a cerclage—a stitch that holds the cervix closed—when she was 14 weeks pregnant with her second son. Despite this precaution, Zachary was also born prematurely, at 33 weeks. Allen spent two and half weeks in the hospital and a month on bed rest. Still, at 30 weeks to the day her water broke. “I was having bleeding on and off and they weren’t really sure why,” she says. One of the hardest things for the Allens was how little the doctors could tell them about what was happening with her body and the baby. “The doctors know so little about it,” she says.
Despite advances in postnatal medical care, the problem of premature birth is nothing short of a national crisis. People aren’t aware that premature birth—which is defined as any baby born before 37 weeks gestation—is such a serious problem, says Dolan. “They think it’s all okay, that everything will be taken care of in the NICU.” Yet although there is much more sophisticated technology to keep preemies alive, a baby born at 25 weeks gestation only has a forty percent chance to live. And premature babies that do survive often face a host of health complications—problems that can last into their adult lives.
“The vast majority of babies are completely normal when they are tested,” says Hickok, “but there are a lot of babies that suffer big consequences, and a lot more that suffer mild consequences. For a lot of these babies, there may be lifelong detriments to their health and well being…that may not be apparent until later on in life.” Dolan agrees, “Which specific children will have which outcomes is not well known at all,” she says. “You just don’t know. Kids do differently and kids heal differently. We still need a lot of research on prematurity.”
According to Dolan, the most common problem in babies who are born early is lung development, and many suffer from “Respiratory Distress Syndrome” (RDS), which can range from a little trouble breathing to the need to be on a ventilator. These babies are usually given surfactant, a foamy substance that lines the inside of the lungs and keeps them from collapsing when the baby exhales. Usually babies born at 35 or 36 weeks do well, says Dolan, “but they may spend some time in the ICU, which can be very hard on families that want that time to bond.” Since preterm birth interrupts normal lung development, preemies are also at higher risk for contracting Respiratory Syncytial Virus (RSV), a common childhood illness that causes infection in the lower respiratory tract and can be fatal for children under one.
The most serious problems occur in babies, like Owen and Dermot, who are born before 28 weeks gestation. In addition to lung problems, these tiny newborns are at risk for a condition called necrotizing enterocolitis (NEC). “That’s when a portion of the bowel dies and needs to be removed,” explains Dolan. They can also suffer from interventricular hemorrhage (IVH), which is bleeding in the brain. In addition to these very serious conditions, micropreemies are also at higher risk for cerebral palsy, mental retardation, and long-term vision and hearing problems.
Who’s at risk?
Although many risk factors have been identified, almost fifty percent of premature labor had no known cause. Women who have had a previous premature delivery, who have cervical or uterine abnormalities, who have been exposed to the drug diethylstilbestrol (DES), and who are carrying multiples (twins, triplets, or more) are all at higher risk for preterm birth. According to Hickok, “Fifty percent of mothers who have a twin gestation have babies who are born prematurely.” African American women are also twice as likely to give birth prematurely than white women. In addition, women who smoke, women who are either grossly overweight or underweight, and women who live in poverty and/or suffer from poor nutrition are also at higher risk. Scientists also believe that pregnant women who work long hours standing up, women younger than 17 and older than 35, and women who do not receive good prenatal care are at higher risk. “Poverty, poor access to prenatal care, lack of health insurance, low pre-pregnancy weight, and poor lifestyle habits—drinking, smoking, drug use—can all contribute to preterm birth,” says Hickok.
Optimizing Chances for a Healthy Labor and Delivery
While more research is needed into what causes premature birth, experts agree that there are several things pregnant women can do to optimize their chances for a healthy labor and delivery. One recent study showed that sheep who were fed a low-calorie diet right before becoming pregnant and during the first part of pregnancy delivered their lambs up to seven days sooner than sheep whose food intake was not restricted. It’s important for women not to get caught up “in recent fads to feel like they’re attractive if they look like skin and bones,” says Hickok, who adds that good nutrition even before getting pregnant, proper exercise, and a healthy body weight are really important factors that contribute to a healthy pregnancy. If you are planning to get pregnant, taking a prenatal vitamin supplement high in folic acid is also important, according to Hickok.
Dolan also recommends that women see their health care provider before they become pregnant to review their overall health, discuss any possible risk factors, and get a pap smear. “Make sure you don’t have any infections,” she says. “Sexually transmitted diseases and urinary tract infections can cause increased risk.” In addition, it is important not to drink or smoke during pregnancy. “Stopping smoking, stopping drinking, and making sure you are the right weight” are imperatives to a healthy pregnancy, says Dolan.
For women who have been identified to be at a higher risk for preterm labor, there is a new test available, called the fetal fibronectin test. The test itself is simple—it involves a speculum exam (like having a pap smear) and is done in a doctor’s office in a matter of minutes. The test measures the presence of fetal fibronectin, a protein that is produced by the fetal membranes and is responsible for keeping the membranes firmly attached to the uterus. At the end of a normal pregnancy the fetal fibronectin breaks down, a signal that the fetus is becoming detached from the mother and is ready to be born. According to Hickok, if fetal fibronectin is present in the cervix or vagina between 22 to 35 weeks gestation (when it should be virtually undetectable), it is a sign that the mother is at high risk for premature labor.
As importantly, says Hickok, “The test has a 99.5% negative predictive value … If it’s negative, the risk of delivery within the next two weeks is 0.5%.” For women at risk, the fetal fibronectin test can rule-out preterm labor and be reassuring psychologically. It also helps doctors make responsible decisions about whether hospitalization, bed rest, and even drugs to stop labor, and other interventions are necessary. “Less than half of all women hospitalized deliver prematurely,” says Hickok, who calls unnecessary hospitalization “one of the biggest overlooked problems in obstetrics today,” arguing that it can create health problems (including blood clots and loss of muscle mass from restricted movement), financial strain, and emotional distress for pregnant women.
If you do have a premature baby, there are dozens of state-run programs and nonprofit organizations that can help. “Once you have your preemie out of the hospital don’t deny that he or she may have ‘special needs,’” advises Allen. “I think the term alone scares and isolates parents. But getting early intervention is so key to the baby’s development, both physically and neurologically.” Allen urges parents of premature babies to be proactive about their health care, and to educate themselves about services available to them. “There is so much help out there for low birthrate babies,” says Allen. “Parents have got to find out what help their baby qualifies for. Although Owen didn’t necessarily show a ‘need’ for many therapies he received, my thought was that any help will only aid in his development.” She advises parents of preemies to communicate as much as possible with their doctors and the health care team responsible for their children and, especially, to join support groups and meet other parents who are going through the same ordeal. “My husband and I realized that we were our boys’ voices,” she says. “We didn’t allow ourselves to get sucked into feeling sorry for ourselves and the devastating position we found ourselves in.”
Owen, who just celebrated his fifth birthday, has a mass of curly blond hair, bright hazel eyes, and a devilish smile. His four-year-old brother Zachary has stock straight brown hair and brown eyes. Both boys are thriving. And their little sister Lucy, 16 months old, was a hefty nine pound two ounce baby delivered by C-section at 39 weeks. The doctors don’t know what was different about Lucy’s gestation but Allen doesn’t care. “I took the baby home the regular way,” she says, remembering being wheeled out of the hospital clutching her healthy newborn to her chest, “which is what I was dying to do.”
For More Information:
www.marchofdimes.com — The resource for all things preemie on the Web, The March of Dimes explains that their mission is “to improve the health of babies by preventing birth defects and infant mortality.” Their Web site has a wealth of information about premature birth, fact sheets, and real-life stories about premature birth. The site has a new section called “Share Your Story” where parents of preemies can write about their own personal experiences and read about the experiences of others.
www.preemie-l.org — This is a nonprofit organization dedicated to helping parents of premature babies. The Web site includes a recommended reading list, an on-line discussion group, and essays and advice sheets for parents and caregivers of premature babies.
www.compassionatefriends.org — The Compassionate Friends, Inc. is an organization that offers grief support to parents, grandparents, and siblings after the death of a child. The Web site includes essays from their magazine, “We Need Not Walk Alone,” as well as information about locating a local chapter and how to grieve the loss of a child.