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Parenting a Premature Baby

Up close of newborn baby

When Darcy Milder's water broke at 4 a.m. on May 6, 2003, she and her husband, Randy, could have been any pair of expectant parents scrambling to get dressed, throwing clothes into an overnight bag, and loading their two sleeping sons into the car. Except that Milder, of Adel, Iowa, was only 28 weeks pregnant, and not nearly ready to welcome her baby into the world.

Within 52 hours of Milder's arrival at the hospital, Logan Milder was born, weighing a mere 2 pounds 4 ounces and measuring just under 14 inches long. He was immediately put on life support in the neonatal intensive care unit (NICU). "His lungs weren't mature enough to breathe, and he couldn't digest milk," says Milder. In fact, Logan was so fragile that his parents couldn't touch or talk to him. "His eyelids were so thin that he needed foam patches to block the light and his ears so sensitive that he wore earmuffs," recalls Milder. During his three-month stay in the NICU, Logan battled severe breathing issues, patent ductus arteriosus (a condition in which a passageway in the heart that normally closes shortly after birth remains open), and dangerously high blood pressure.

Finally, in July -- the month he was originally due -- Logan was released from the hospital. Because he still required oxygen and was vulnerable to infection, keeping him healthy was a daily battle for the Milders. "Since Logan still had tubes in his nose supplying oxygen, if he got congested, his oxygen level plummeted. To keep him from getting sick, we couldn't take him out of the house except to go to the doctor. We didn't even share Thanksgiving, Christmas, or Easter with our families, because we couldn't chance being around other people," says Milder. Now 3 1/2, Logan recently came off oxygen and is doing fantastic, says Milder. "The only sign of Logan's prematurity is his tiny size -- he's about as big as an average 1-year-old," she says.

Logan is one of approximately half a million babies -- about 12 percent of all births -- who arrive prematurely, or before they've reached 37 weeks of gestation, in the U.S. each year. The number of premature babies has increased by 30 percent since 1981, but the survival rate for these tiny babies has improved dramatically over the last few decades. "When I started my training in 1987, a baby who survived at 25 weeks gestation was quite amazing," says Andrew R. Barden, MD, medical director of the NICU at St. Luke's Hospital, in Cedar Rapids, Iowa. Although extremely premature birth still significantly increases a child's chances of dying before hospital discharge, "now our expectation is that a baby born at 25 weeks will live," he says.

Like Darcy Milder, many parents of preemies wonder what prompted their child's early arrival. "I thought having a premature baby was something that happened to people who smoked or drank, or who didn't get prenatal care," says Milder. "Whereas I was young and healthy, and I did everything by the book."

According to the March of Dimes, 25 percent of the time, there's a problem (such as preeclampsia, a condition marked by high blood pressure, swelling, and increased protein in the mother's urine) that indicates that the baby has to be delivered early for his own or the mother's well-being. But about 75 percent of preterm births occur spontaneously, and in nearly half of these cases, doctors don't know why it happens.

However, there are risk factors for early labor: carrying twins or more kids, a history of preterm delivery, or some uterine or cervical abnormalities. Additionally, moms who are obese or who have high blood pressure, diabetes, or other chronic health problems may be at increased risk for preterm delivery. Some infections, as well as smoking, drinking, and drugs, have also been linked to prematurity.

A recent March of Dimes study also points to increasing rates of cesareans and inductions as a factor in the rise of babies born between 34 and 36 weeks.

Preemie Problems

Because preterm babies enter the world without the benefit of a full 40 weeks to develop safely inside their mother, they're vulnerable to a range of complications. Some are lucky enough to be relatively healthy, while others battle many serious problems, such as heart conditions, bleeding in the brain, compromised kidney function, jaundice, and anemia. Additionally, because they have immature immune systems, preemies are especially susceptible to infection.

The earlier a baby is born, the smaller and less developed she'll be and the higher her risk for complications. Babies born before 32 weeks face the greatest risk of death and long-term disabilities such as mental retardation, cerebral palsy, lung and gastrointestinal problems, and vision and hearing loss. The good news: More than 98 percent of babies born between 32 to 35 weeks survive.

Taking any newborn home from the hospital can be unnerving, but caring for a preemie can be even more intimidating. "At the time of discharge, ask the neonatologist if he or she has any recommendations for your child," says Dr. Barden. Often, he or she can suggest a local practitioner who is experienced in treating children born prematurely. Choose someone you feel comfortable with for the long term. "It's important to have ongoing, consistent medical care by one practitioner -- be it a pediatrician, family physician, or nurse practitioner -- who sees your baby regularly," says Dr. Barden.

The NICU staff should be able to advise you on choosing a car seat that will work well for your child. Babies weighing less than about 4 pounds are usually given an oxygen saturation test while sitting in their car seat to ensure that they can maintain an open airway while in their seat, explains Dr. Barden. "Some very small babies need to use a car bed instead to maintain appropriate oxygen levels," he adds.

When it comes to how often and how much babies need to eat, check with your child's doctor, as different babies have different needs. In general, though, premature babies need to eat every four hours until they reach their original due date, explains Dr. Barden. "After that, they can usually be fed in exactly the same way as other babies." Finding clothes small enough to fit a preemie can require a little digging. "Most of the 'preemie clothing' I found at local stores was made for babies weighing about 5 to 7 pounds, so they were enormous on Logan at first," recalls Milder. To find a good fit, she ended up ordering bodysuits, gowns, and sleep sacks online. Another tip: Opt for clothing that snaps up the front rather than zippers, so you can easily feed the wires for monitors and other equipment between the snaps.

Guarding Against Illness

You will need to be especially on guard against respiratory illnesses, which can be particularly troublesome for preterm babies. "Many times, if preemies acquire viruses such as respiratory syncytial virus [more commonly known as RSV] or influenza, they will be sicker, so it's important to avoid them, particularly if your child has underlying heart or lung disease," says Dr. Barden. His recommendations: Don't smoke, and limit your newborn's exposure to other children.

Finally, be aware that premature babies face an increased risk of sudden infant death syndrome (SIDS) and that the timing of their risk differs from that of full-term babies. "The peak incidence of SIDS for term babies is 14 weeks," says Donna R. Halloran, MD, assistant professor of pediatrics at Saint Louis University School of Medicine. "Preterm babies born between 22 and 27 weeks' gestation tend to die from SIDS at 20 weeks -- six weeks later than full-term babies." Her advice: Be extra vigilant about following SIDS risk-reduction guidelines, and stick with them for a full year. Here's a refresher: Always put your baby to sleep on his back in his own crib, don't smoke, don't let him become overheated during sleep, and keep soft toys and loose bedding out of his sleep area.

Baby Care Basics: Concerns for Premature Babies
Baby Care Basics: Concerns for Premature Babies

While full-term babies are evaluated based on their actual age, a premature baby is assessed based on her corrected age (also called adjusted age), or how old she'd be if she had been born on her due date. Take, for example, a baby born three months early: "When she's 6 months old, we don't expect her to do 6-month-old tasks. We expect her to do 3-month-old tasks," explains Dr. Barden. "If she's meeting the 3-month milestones, then she's developing appropriately for her corrected age." (Vaccines are the one exception to the corrected-age rule. "Immunizations should be given based on a child's chronological age," he notes.) By age 2, the range of normal development is so wide that there aren't distinctions, says Dr. Barden.

A preterm baby's physical growth is also assessed based on adjusted age. Your child's doctor will be looking at how quickly your son is growing and will want to see that he is growing parallel to the growth curve, even if his height or weight (or both) is below the average for his age group, says Dr. Barden. "Premature babies who were born extremely early, who were extremely small for their gestational age, or who have severe ongoing medical problems may be small compared to their peers for some years," he adds. "Many of them will continue to grow somewhat faster than their peers through the elementary school years, catching up to the average, year by year, for quite a while."

However you add it up, nothing could be sweeter than watching a baby who once battled to breathe develop into a happy, active kid. "Even though I already had two children, caring for Logan was like taking Parenting 101 all over again. Raising a full-term child doesn't prepare you for parenting a preemie," says Milder. "You start out as a spectator -- many of us can't hold or touch our children for weeks or months -- but slowly and surely, your job becomes hands-on. Day by day, you might not notice it, but month by month, you will see prematurity loosening its grip on your child."

Would you recognize preterm labor? Familiarize yourself with the following signs and contact your healthcare provider right away if you experience one or more.

  • Contractions every 10 minutes or more frequently.
  • Bleeding or leaking fluid from the vagina.
  • Pelvic pressure.
  • A low, dull backache.
  • Period-like cramps.
  • Abdominal cramps with or without diarrhea.

Help for Families of Preemies

"Having a premature baby can be a very isolating experience," says Melissa Middleton, of Oklahoma City, who gave birth to quadruplets at 25 weeks' gestation. Three of her children survived, but one son died as a result of complications from an infection. She found emotional reassurance by connecting with parents of other preterm babies at shareyourstory.org, which is part of the March of Dimes' NICU Family Support project, a hospital-based educational and comfort program that will be available nationwide by the end of 2007. "Whether it's through the March of Dimes, your hospital, or your community, I encourage parents of premature babies to get connected to others as soon as possible," says Middleton.

Kristen Finello is a freelance writer in Scotch Plains, New Jersey, and the mother of a daughter.

Originally published in American Baby magazine, November 2006.

All content here, including advice from doctors and other health professionals, should be considered as opinion only. Always seek the direct advice of your own doctor in connection with any questions or issues you may have regarding your own health or the health of others.