A simple tote bag from Gillette Children's is proving to be a powerful tool.
The tote bag contains a collection of tools and educational materials to support parents of children who need cleft lip and/or palate repair. The carefully designed “Smile Bags” are a way for the Gillette craniofacial team to reach out to parents who might be feeling anxious and overwhelmed by their new baby’s diagnosis. The bags are handed out during prenatal visits or shortly after parents receive their child’s diagnosis.
“It really is a nice first step on our journey with these parents,” says Gillette advanced pediatric nurse practitioner, Katie Bucka. “It’s a way to show families that we’re there for them and are happy to help.”
Bucka is part of a team of three advanced pediatric nurse practitioners (APRNs) at Gillette that includes Martha McGrory and Anna Rauch. These APRNs have privileges at many of the Twin Cities metro area hospitals which allows them to visit the hospital just after a mother has delivered her baby. “Our first step is to congratulate the parent,” says Anna Rauch. “We then spend time watching the baby eat and providing guidance and we answer any questions.”
One of the largest and best craniofacial programs in the U.S.
Cleft lip (a separation in the upper lip) and cleft palate (a split in the roof of the mouth) are the most common types of conditions that affect the skull and face. Each year, the conditions affect one in every 600 to 690 babies born in the United States, according to Cleftline. No one knows exactly what causes clefts, but some medical specialists believe that family history and environmental factors (such as medications or vitamin deficiencies) play a role.
Babies born with cleft issues might have feeding concerns and may need to use a special bottle or nipple. The Gillette “Smile Bag” has a Dr. Brown specialty bottle and nipples (level 1 and 2). Dr. Brown is one of the most common specialty bottles used for children with cleft lip and palate. It also contains a special pacifier with clip, a burp cloth, bib and information about what to expect when caring for a child who has a cleft lip and/or palate.
“Many families have questions about what to expect when their child is born with a cleft lip and/or palate such as what their child will look like and what type of surgery is needed,” Rauch says. “It is normal for parents to also have concerns about how to feed their baby with a cleft lip and/or palate and how the cleft will affect their child long-term such as socially and developmentally.”
Gillette has one of the largest craniofacial programs in the country. The team at Gillette includes craniofacial and pediatric plastic surgeons, neurosurgeons, dentists, orthodontists, speech-language pathologists, advanced practice pediatric nurse practitioners, audiologists, dieticians and feeding specialists. The American Cleft Palate Association has certified Gillette as a site for cleft care.
APRN Martha McGrory has extensive experience supporting parents and children through their craniofacial care journey. “Each child’s journey with cleft lip and/or palate is unique and we’re honored to participate in the care for these children,” McGrory says.
A smile goes a long way
One of the hallmarks of craniofacial care at Gillette is the team approach to creating a unified, cohesive plan for each child. Pediatric craniofacial and plastic surgeon, Martin Lacey, MD, has more than 30 years of experience caring for children who have craniofacial concerns. He wants parents to know Gillette can be their craniofacial partner every step of the way. “We develop an ongoing relationship with families,” Lacey says. “The first year is certainly, in many ways, the most important year for cleft lip and palate care because that’s when you have the opportunity to correct a problem and do the initial surgery. But long-term follow-up to monitor speech as well as growth and development through all the stages of life is part of proper cleft care. At Gillette, we have the ability to monitor and do all of the necessary care in-house.”
Lacey hopes parents appreciate the care and thought that went into creating the “Smile Bags” and adds the real key is the opportunity for parents to be introduced to the craniofacial team at Gillette. “Katie, Martha and Anna are awesome members of the team. The skills they bring and the importance of having three well-educated, skilled nurse practitioners who are also feeding experts should be reassuring to families.”
Lacey says everyone on the team gets great satisfaction helping cleft lip and palate patients. “I genuinely feel there are very few things you can do to a person that have greater impact on their long-term life. A well repaired cleft lip and palate that functions well, it’s probably the single most satisfying you can do for a person,” Lacey says.
APRN Martha McGrory adds, “A smile goes a long way and smiles certainly brighten up the day. It’s always wonderful to pass along a smile, and in this case, a SMILE BAG to help a family start off in the right way.”
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