At 1 pound, 8 ounces, and less than 25 weeks old, little Adaline, barely the length of a ruler, had paper-thin skin that was so sensitive, she was placed gently on plastic in her incubator. Eyes still fused shut, she balked at the tube in her tiny mouth. There were wires poking in and out of everywhere and mom, Rachael Weil—herself an experienced pediatric nurse educator—was beyond words. “I cried when I first saw her in the Isolette. I have never seen a baby so small. Being discharged and leaving the hospital without her was the hardest day of my life. My husband, Rob, handed me a blanket with her smell and I cried.”
World Prematurity Day Prepares New Parents
World Prematurity Day, each year on Nov. 17, acknowledges the journeys of babies like Adaline and raises awareness for parents and families of the challenges that many of these delicate preemies face—while in the hospital and sometimes for years after they are released.
Adaline spent 122 days in the Johns Hopkins All Children’s neonatal intensive care unit (NICU) and at 9 months is a healthy, happy baby. Her mother, who works one floor below the NICU at the hospital, is beyond grateful for the care and treatment Adaline received. “We had an amazing experience in the NICU,” she says. “Every single person who crossed her path provided excellent care, and my husband and I are forever grateful that they saved her life.” Weil believes her experience as a nurse helped her and Rob get through the experience.
Families face many challenges while having a baby in the NICU. One of the less commonly discussed is the toll on emotional health for the parents. “The incidence of postpartum mood and anxiety disorders (PMADs) increases exponentially for NICU families,” says Lacy Chavis
, Psy.D. In fact, the rate of PMADs can be as high as 75 percent of new parents facing a long-term NICU experience, with only a small fraction independently seeking help, which is why the NICU sponsored a World Prematurity Day event that included a talk by Chavis on ways families can cope with the depression and stress that can come with having a sick child.
“Developing a strong social support system and taking time for yourself are key ingredients to developing resiliency,” Chavis explained at the event. “When we support parental emotional health, we improve the long-term outcomes for the parents and their infant.”
Helping Families Raise Preemies
Betsy Vaught, MA, a developmental care specialist, planned World Prematurity Day at Johns Hopkins All Children’s. “The event doesn’t just raise awareness, it also acknowledges and supports these babies and their families throughout their journeys. I’m really proud that Johns Hopkins All Children’s has the technology, the skills and the programs to guide and support infants and their families through the NICU journey and beyond. Our goal, and the goal of this event, is to educate parents-to-be on the things they can do to support a healthy pregnancy and full-term birth. In the event of prematurity, we are here to support them through that as well.”
NICU nurse, Lynne Buscaino, R.N. agrees, “Infants, no matter how premature, always do better when the family is involved in their care.”
Vaught, who has focused her career in the Johns Hopkins All Children’s NICU as a developmental specialist since 1985, is aware of the subtle forms of communication that preemies have. They are easily overstimulated and require precision-level care that can be taught to families. “We work with families in the most intimate, vulnerable times in their lives, guiding parents through their first awkward moments of providing a loving, nurturing touch amidst the wires, IVs and equipment. It’s a delicate balance between being there and knowing when to step back and let the parent in.”
Both Vaught and Chavis recognize the importance of education for new parents of preemies and appreciated the opportunity to hold a World Prematurity Day event. The program included lunch along with information presented by Jennifer Arnold
, M.D., on the Center for Medical Simulation and Innovative Education
training available to new parents, a talk by Chavis on avoiding stress for new parents and information from Jenelle Antuna, R.N., about NICU follow-up programs. Other professionals were on hand for parents, offering information on lactation, social work, developmental therapies and more.
“It’s a blessing and a curse to have a preemie and be a pediatric nurse,” new mom Weil concludes. “Maybe we know too much. But I feel very fortunate to have seen it from the parent side. This experience has changed me as a person and as a health care professional. It’s a level of knowledge and understanding that I will be able to share with my coworkers and our families and patients.”