Newborn Craniofacial Kits Help Families in Need
By Katie Bazyluk & Sandy Gilbert
Good nutrition is critical to every newborn child. However, babies with a cleft lip or cleft palate often experience feeding and nutritional challenges. Due to the clefts — or openings — in either their upper lip and/or the roof of their mouth (palate), the babies have trouble sucking milk from breasts or standard bottles. They also experience nasal regurgitation (when food and liquid enters the nose) because the hole in their palate doesn’t provide enough separation between their nasal cavity and their mouth.
Without specialized feeding equipment, these feeding challenges can cause nutritional deficiencies that lead to growth delays. In addition to the normal stresses of having a newborn, parents of a baby with a cleft lip/palate or other craniofacial condition have so much more to navigate. That’s where myFace comes in!
myFace is a national nonprofit that has served individuals impacted by craniofacial differences and their families for 72 years. In February 2021, myFace partnered with fellow nonprofit Welcome Baby to provide low-income families with free Newborn Craniofacial Care Kits. Most babies with a cleft lip undergo lip repair surgery at about 3 months of age. Then, when they’re about one year of age, they have another surgery for palate repair. So they need to gain weight quickly to meet growth milestones and be strong and healthy enough to undergo both corrective surgeries.
That’s why each kit has essential items — like Dr. Brown’s® Specialty Feeding System — to facilitate adequate nutritional intake during the babies’ first weeks of life. They also include general newborn supplies that low-income families need, such as diapers, clothing, and baby grooming items, as well as items to help celebrate the new baby’s arrival.
So far myFace and Welcome Baby have delivered more than 400 Newborn Craniofacial Care Kits (valued at $160 each) to low-income families via partnerships with craniofacial medical teams at 37 hospitals across the country.
Each kit provides the following items:
Newborn with a cleft lip and palate drinking from a Dr. Brown’s bottle. Image provided by MyFace.
Dr. Brown’s® Specialty Feeding System: Babies born with cleft lip/palate and other craniofacial conditions often cannot generate enough suction to extract fluid from a breast or a bottle. Dr. Brown’s® Specialty Feeding Systems include an Infant-Paced Feeding Valve, which makes the bottle function as a “compression” bottle. This allows the infant to more effectively pull liquid from the bottle, enabling adequate oral intake.
Dr. Brown’s® PreVent™ Pacifier: Designed by a pediatric dentist, the 100% silicone bulb features a patented suction-free air channel and thin bulb stem that reduce pressure inside baby’s mouth, helping prevent dental issues such as posterior crossbite.
Wrap Carrier: Infants born with a cleft lip/palate have a challenging feeding experience before their corrective surgeries take place. A wrap carrier helps to hold baby upright for an extended period after feeding to ensure that they keep their milk down.
Nursing Pillow: The nursing pillow helps to maintain the infant in an upright position while feeding since babies with clefts take longer to feed and experience regurgitation.
Sleepea® Baby Swaddle: The swaddle is very helpful in keeping the baby’s hands away from their face following surgery.
"Jack's New Smile: Having a baby with cleft lip and palate": A book written by Ruth M. Trivelpiece, Suzanne N. West, and Jennifer L. Rhodes to help brothers and sisters of a new baby with cleft lip/palate better understand their sibling’s condition. It provides answers to questions children may not know how to ask, and serves as a starting point for a more in-depth talk with older children.
General newborn supplies, including diapers, a layette, baby wipes, Desitin®, baby wash and baby lotion, a grooming kit, diaper cream, and more!
With National Nutrition Month just around the corner in March, myFace is especially appreciative of our partnerships with Welcome Baby and Dr. Brown’s that have enabled us to support the nutritional needs of hundreds of babies born with craniofacial anomalies.
“Dr. Brown’s Medical is proud to partner with myFace and Welcome Baby in providing care kits for families after the birth of their little one,” said Sandi Aubuchon, MA, BSN, RN, President, Dr. Brown’s Medical Division. “We are so glad to be able to provide the appropriate feeding bottle system so these families can achieve successful, happy, and healthy feedings.”
Guadalupe Gutierrez and family with the contents of the Newborn Craniofacial Care Kit from myFace.
Deborah Malkoff-Cohen, MS, RD, CDN, CDE, the Registered Dietitian on the craniofacial team at the myFace Center for Craniofacial Care at NYU Langone Health, has given kits to dozens of families in the last 2 years. She says, “As soon as the baby is born, I’m in contact with the parents to ensure that their newborn is feeding well. The Newborn Craniofacial Care Kits alleviate families’ anxieties by providing them with specialized bottles — which are essential to a successful feed.
One reason I like the Dr. Brown’s® Specialty Bottles is that the baby is in control of the feeding. When they get tired and want to take a break, they can simply stop compressing the nipple (which contains a special infant-paced feeding valve), and resume feeding whenever they are ready.”
Guadalupe Gutierrez received a Newborn Craniofacial Care Kit from NYU Langone Health for her son Roy, who was born with a cleft lip and palate. Roy initially had difficulty feeding from a bottle. In fact, he spent the first month of his life in the Neonatal Intensive Care Unit (NICU) due to his difficulty feeding, and his inability to gain weight. Roy did eventually take to a specialized bottle and began to grow and thrive.
Guadalupe shared, “this kit was very helpful… at a difficult time.” When her newborn son struggled with feeding, the kit was a welcomed gift she said — it even included “specialized bottles, and a nursing pillow to hold him up so that he kept his milk down.” Unfortunately, Roy’s first (lip) surgery was delayed because of his slow growth in the beginning. Thankfully, Roy began eating and growing well and was able to have the surgeries.
For this family, the craniofacial care kit made all the difference; it “provided everything Roy needed to thrive in his first month of life.”
The Newborn Craniofacial Care Kits are not given directly to individuals, but rather to hospitals that then distribute them. For more information about the program, please visit www.myface.org/welcomebaby. To learn how the craniofacial team at your hospital can distribute these kits, please email Sandy Gilbert, Senior Program Director at myFace, at Sandy@myFace.org.
For questions regarding nutrition associated with cleft lip/palate or other craniofacial conditions, please reach out to Deborah Malkoff-Cohen, MS, RD, CDN, CDE, at the myFace Center for Craniofacial Care at NYU Langone Health, at Deborah.Malkoff@nyulangone.org.
For more information about Welcome Baby, a nonprofit that provides low-income mothers with a comprehensive care package containing everything she and her newborn will need in the first four weeks of life, please visit: https://welcomebabyusa.org.
Article written by two members of myFace staff, Katie Bazyluk (Communications Manager) and Sandy Gilbert (Senior Program Director).