[Ed. Note: This is the first in a series of six occasional posts about Children’s Hospital Boston staff who received Patient Services Research Grants in 2011. This grant program engages the professional staff in the Department of Patient Services in high quality pediatric research with the ultimate goal of improving child health.]
It has been nearly 20 years since the American Academy of Pediatrics released the recommendations that fueled the “Back to Sleep” campaign, which encourages parents to put babies to sleep on their backs to reduce the risk of sudden infant death syndrome (SIDS). And it’s worked: In less than 10 years, the rate of SIDS deaths dropped by more than half.
But with this drop came an upsurge of brachycephaly – a “positional head shape deformity” characterized by a gradual flattening of the back of an infant’s head from resting on a firm or semi-firm mattress.
Apart from its rise in the general population, brachycephaly and two other head shape deformities – plagiocephaly (flattened side) and scaphocephaly (flattened and elongated sides) – have long been problematic in neonatal intensive care units (NICUs), where infants spend much of their time in bed. While some children outgrow head shape deformities over time, and in others the shape can be corrected with a helmet, “there are some children that have this head shape for the rest of their life,” according to Michele DeGrazia, a neonatal nurse practitioner in Children’s Hospital Boston’s NICU and the unit’s director of nursing research. And corrective helmets are not the best answer: They can be uncomfortable for the babies, and some parents see wearing a helmet as a stigma.
And so it was providential that DeGrazia found herself with an opportunity to see whether there is a better way, apart from regularly changing infants’ sleeping positions, of preventing head flattening among babies in the NICU in the first place. “I was originally going to study head shape in children who spend a lot of time in car seats,” says DeGrazia. “But then I learned from a colleague about a new device called the Cranial Cup that is designed to help full term babies with plagiocephaly and said, ‘We need to try this in the NICU.’”
After working with Boston Brace, the device’s designers, to downsize it to fit the smaller bodies of premature infants, DeGrazia ran a pilot study of the Cranial Cup in 2009. “We were able to help them shrink the device down to fit a 1,000 kilo premature baby,” says DeGrazia. “We also added cushioning pads, covers, and ‘bed buddy’ bumper pillow to help make the babies more comfortable and secure.”
The results of the pilot were promising enough for her to launch her current study, which, with the support of Patient Services Research Grant, compares the Cranial Cup with another device called the Z-Flo that may also help prevent head flattening.
DeGrazia and her team aim to recruit 160 premature and full term infants following birth over the course of the study. They are comparing the effects of the two devices by mapping the infants’ heads using a laser scanner, in addition to standard measurements of head shape.
DeGrazia marvels at the combination of people and fields from technology, medicine, and nursing that have come together in the study to improve baby care. “This truly is cutting edge, multidisciplinary, multicenter research. We are currently recruiting here and at St. Elizabeth’s Medical Center and Brigham and Women’s Hospital” she says. “We hope that through this study we won’t have to send babies home with head shapes that stay like this for the rest of their lives, or force them to wear a helmet.”
Between car seats and baby beds, what draws her to questions about head shape? “I’m interested in questions that I think are important for better care and which haven’t been well studied,” she says. “And this is an important area. One of the physicians I work with told me recently that half of the babies in her child’s daycare are wearing helmets to correct head shape.
“It’s incredibly important to parents, too. Parents want to be proud of their babies, and part of that pride comes from having a baby with a regular head shape that looks healthy,” she notes. “I have one mom whose premature baby participated in the pilot who still sends me pictures, and comments on how thrilled she is about her baby’s apple-shaped head, knowing that it could have been different.”