J.C. was born nearly four months early when he arrived into the world on June 5. “No one anticipates seeing their child at 24 weeks outside the womb,” says Vanessa Ohakam from Silver Spring, Maryland,…
J.C. was born nearly four months early when he arrived into the world on June 5.
“No one anticipates seeing their child at 24 weeks outside the womb,” says Vanessa Ohakam from Silver Spring, Maryland, who asked that only her son’s first and middle initials be used for privacy’s sake. “They’re cute when it’s the ultrasound picture … but him actually being there in person, it was a scary sight. He was very small — his legs probably looked the width of my finger.”
J.C. weighed just 1 pound and 10 ounces, placing him in the extremely low birth weight category (that is, below 1,000 grams or 2.2 pounds) among the tiniest infants. For preterm babies of this size, also sometimes called micro preemies, all organs are still immature — not fully developed — and they’re not yet able to feed or latch to nurse. J.C. was born essentially on the cusp of viability — needing round-the-clock care in a hospital neonatal intensive care unit to survive.
His early birth had been anticipated after a routine 20-week prenatal checkup, when it was determined that Ohakam had an incompetent cervix or cervical insufficiency; in such relatively rare cases, the cervix opens, or dilates, too early, which can lead to a premature birth or miscarriage. Little could be done, but Ohakam was admitted to the hospital to try to buy precious time for J.C. to continue developing in utero. “I was on bed rest in the hospital in what they call Trendelenburg position. So that’s where your head is downward on an angle — like maybe a 30-degree angle — when you’re feet are upwards. So the idea behind that is to relieve pressure off your cervix. So I was like upside down for two weeks pretty much … trying to prevent my water from breaking,” she says. “But at about 23 weeks and four or five days or so, my water broke, and they gave me steroids to help with the baby’s lung development, as well as to help prevent any brain bleeds.” She delivered right at 24 weeks. ( The March of Dimes notes that the American College of Obstetricians and Gynecologists and the Society for Maternal-Fetal Medicine now define a full-term pregnancy as one that lasts between 39 weeks, 0 days and 40 weeks 6 days.)
After initially spending time in another hospital’s neonatal intensive care unit, he was transferred to Children’s National Health System in Washington. Despite Ohakam being given steroids before J.C. was born, he had some hemorrhaging in his brain which led to hydrocephalus, a buildup of fluid in the brain, which required surgery that was performed at Children’s National.
Along with medical interventions, a key component of care the smallest babies, like J.C., receive in NICUs is nutrition.
In addition to ongoing efforts to nourish babies in its NICU, recently a team at Children’s National undertook research evaluating a quality improvement project to standardize feeding practices for very low birth weight babies — those under 1,500 grams, or about 3.3 pounds. The researchers found that doing so with strategies ranging from tracking adequacy of calorie, protein and micronutrient intake to maximizing the use of the mother’s own breast milk significantly boosted critical weight gain in these babies. “The average weight for our very low birth weight infants improved by nearly 30 percent — which is very difficult to do within this population,” says Michelande Ridoré, NICU quality-improvement lead analyst at Children’s National on the multidisciplinary team that also featured dietitians, nurses, neonatologists and a lactation consultant. Ridoré will be presenting the group’s findings, which haven’t yet been published, at the Virginia Neonatal Nutrition Association conference later this month.
Survival rates vary greatly based on a baby’s weight and gestational age, among other factors. For a baby born at around 25 weeks gestation, the survival rate can be as high as in the 90 percent range, says Dr. Jon Fanaroff, director of Rainbow Center for Pediatric Ethics at UH Rainbow Babies & Children’s Hospital and professor of pediatrics at Case Western Reserve University School of Medicine in Cleveland. But it can fall off precipitously for babies born before 24 weeks, and for the smallest micro preemies. However, advances in care across the board are helping extremely low birth weight babies gain critical weight to grow and develop, and there’s been increasing recognition of the importance of early nutrition. “It is tough to tease out the effect of nutrition as an independent variable on survival,” says Dr. Richard Polin, director of neonatology at New York-Presbyterian Morgan Stanley Children’s Hospital and a professor of pediatrics at Columbia University. There have been a lot of advancements: from temperature regulation to how lung disease is managed in babies. “But nutrition is very important,” he says.
“The No. 1 priority for feeding is that we use human milk — with the most preferred being Mom’s milk,” Fanaroff says. When it’s not possible to use expressed, or pumped, breast milk that’s tailored to the baby’s needs, clinicians try to use donor breast milk; or special formulations made for premature babies are used. “We tell families, feeding is a very complex activity — it’s almost like exercise for these babies. It takes a lot of coordination of suck and swallow, and so usually they don’t get that ability until somewhere between 32 and 34 weeks gestation,” Fanaroff explains. “So initially they’re fed through a soft feeding tube.” The tube goes in through the infant’s mouth or nose, down the esophagus into the baby’s stomach.
Along with the milk or formula given through feeding tubes, starting in the very early-going, these tiny infants get additional nutrition — proteins, carbohydrates, vitamins and minerals and also fats — through an IV, called total parenteral nutrition, or TPN. “Now we actually will start babies on that TPN in the first hours of life, so that they can continue to build new muscle and bone to grow,” Fanaroff says.
While very small or premature babies aren’t able to breastfeed, mothers are still encouraged to provide these babies with sustenance — including colostrum, the first form of milk that’s produced — where possible. “Really breast milk is the best medicine for these little babies. So immediately after I delivered, the lactation consultant came to see me, and she taught me how to express my breast milk by hand,” Ohakam says. “Then once I was admitted to the maternity unit, I had a breast pump, and I really got to it pumping the colostrum, which is full of antibodies for the babies.”
Donor breast milk and improved formulas provide alternative options and can also serve as a supplement where needed. “There are formulas designed for preterm babies, and there are supplements called fortifiers, which are added to breast milk to make it a better nutritional source,” Polin says.
Research also makes it clear that very low or extremely low birth weight babies benefit from things like protein even in the very early-going, where there used to be concern their tiny bodies — and underdeveloped kidneys — wouldn’t be able to tolerate it. “A lot of the research coming out [has] helped us understand that we need to give them more protein, to start earlier,” says Dr. Lamia Soghier, medical director of the neonatal intensive care unit at Children’s National.” Now we start immediately when they come into the unit. We don’t wait. We maximize our nutrition.”
When babies born prematurely leave the hospital — just as with all babies — parents are encouraged to continue with breastfeeding (or giving the baby breast milk by bottle), if possible. “Sometimes as preemies go home they do generally need some formula just as a nutrient booster to give them a little more protein and other vitamins and minerals and things,” says Rebecca Vander Veer, a pediatric dietitian in the NICU at Children’s National. “But the ones who have started on Mom’s milk and continued on Mom’s milk through the first six months to 12 months of life, they do really well in growth and other outcomes, and we’ve seen that in the research too.”
For J.C., it’s all added up to weighing around what he might have had he been born full-term. Today, he’s 6 pounds and doing well. While he’s still being monitored closely at Children’s National, and recently had the surgery to address hydrocephalus, Ohakam and her fiancé hope to take him home soon, as they work to get him to take more breast milk by bottle.
“He has so much fight in him, and to see how much that he’s overcome, and he’s still fighting, it inspires me,” Ohakam says. “He’s my little hero.”