The February 2023 NeoReviews Video Corner entitled, ‘Two Severely Edematous Infants with Local Area of Drainage,’ (10.1542/neo.24-2-e130) features an infant graduating from the “BEADS FOR BABIES PROGRAM.”
Parents can experience a range of emotions including anxiety, fear, guilt, and helplessness while caring for a sick infant. These emotions are often coupled with the practical challenges of having a baby in the neonatal intensive care unit (NICU). Some parents have difficulty sharing these emotions. To help parents through this challenging time, the NICU at The Women’s Hospital of the University of Missouri Health Care developed the “BEADS FOR BABIES PROGRAM,” a program encouraging parents to create beaded necklaces with their peers and staff to highlight their infant’s journey through the NICU. There are over 100 possible milestone beads including admission (a bead with small feet), boy or girl (a pink or blue pacifier), courage (a lion), kangaroo care (a kangaroo), first PO feed (a donut), first bath (a duck), breastfeeding (a cow), number of IV’s (bumble bees), and CPAP (an elephant).
The program had 2 goals in mind:
- Offer a unique opportunity for parents to tangibly document the milestones and achievements of their infant
- Give parents an opportunity to gather and share their NICU experience in a relaxed format while beading
Unanticipated benefits emerged over time. For example, beading with peers provided parents with a support group in a less intimidating format, as well as working with a social worker one-on-one created a relationship which is conducive to sharing experiences and being receptive to supportive counseling. The beading was also used to help a mother with hypertension and lower her blood pressure allowing her to be with her baby. Comments made by parents include, “a great stress relief,” “a great distraction,” and “one happy thing to do here.”
Parents who were reluctant to participate were so appreciative of the program. On occasion a parent would ask to do beads while their baby was in surgery to help “keep my mind off of it.” The unique nature of the beads, as well as the realization by parents as their necklace grows, has been eye opening as they see a representation of their infants’ journey in the NICU and an opportunity to tell the NICU story in a tangible fashion. One infant featured in the article left the NICU with over three pounds of beads!
One might think this program is only enjoyed by mothers; however, this is far from the case. Often fathers are very involved and feel it is one activity that acknowledges their role in the NICU. For example, one father made a necklace to put on his truck’s rear-view mirror, a source of pride.
Parents who have experienced the death of their infant have often displayed the baby’s beads at the funeral as a way of sharing the infant’s journey. Although this is a painful reminder of the difficulties the infant experienced, parents have also expressed pride in their infant’s courage.
This program has far exceeded my expectations in so many ways and is also rewarding for the medical teams as the beads also represent their success in offering the best care possible. This program is just one more bead to add to the necklace of success when it comes to advocating for our patients and their families.
Figure citation: Jennifer Hanford, Dana Bichianu, Dalal Taha, Akshaya Vachharajani; Two Severely Edematous Infants with Local Area of Drainage. Neoreviews. February 2023; 24 (2): e130–e135