For Remi’s family, it’s more than the unparalleled care that makes them grateful for Shriners Children’s – it’s the opportunity for their daughter to be celebrated for exactly who she is.
Remi’s parents, Kayla and Collin, learned that she might have both a cleft lip and cleft palate during Kayla’s 20-week anatomy scan. A cleft lip forms when the upper lip does not develop properly, resulting in a gap that can affect a newborn’s appearance, feeding and speech. Similarly, a cleft palate occurs when the tissues on the roof of the mouth do not fuse correctly.
Both diagnoses were confirmed before Remi was born. Kayla’s care team at Baystate Medical Center referred her to Shriners Children’s New England, a place her family was familiar with. “We have always known about the work of Shriners Children’s,” said Kayla. “Remi’s father, grandfather and great-grandfather have fundraised for Shriners Children’s through the Freemasons.”
Remi first saw Jonathan Lee, M.D., MPH, a plastic surgeon and director of the Shriners Children’s New England cleft lip and palate program, when she was just 3 weeks old. Dr. Lee used lip taping, a non-invasive technique, to help stretch Remi’s skin and align her lip in preparation for surgery. Her progress was assessed monthly until Dr. Lee performed her cleft lip surgery when she was 4 months old. Remi followed up with regular clinic visits until her cleft palate surgery at 14 months old.
Dr. Lee’s expertise and accessibility were key in helping Kayla and Collin navigate Remi’s treatment. The ability to check in regularly and have their questions answered gave them reassurance and peace of mind. “We can’t say enough about Dr. Lee and the impact he has made,” said Kayla. “He made us feel comfortable and prepared for both the cleft lip and cleft palate surgeries. His skill as a surgeon is unmatched. It is a huge relief to know Remi is in such good hands.”
The unique, wrap-around care model at Shriners Children’s New England equally supports patients and families. “The staff check in with us at every appointment and prior to every surgery to see if we need any assistance,” said Kayla. “Even Remi’s brother Kai, who isn’t a patient, has been to a couple of her appointments and is treated just like Remi.”
We love that Shriners Children’s not only cares for Remi but celebrates her for exactly who she is.
All the specialists involved in the cleft lip and palate program are available to families at monthly clinics, streamlining care for convenience and efficiency. Families like Remi’s can consult with a plastic surgeon, speech therapist, occupational therapist, dietitian and orthodontist all in one day, depending on their child’s specific needs. After each clinic, the entire team gathers for a conference to discuss the care plan for every child in attendance.
A highlight of Remi’s visits to Shriners Children’s New England is the opportunity to meet with the cleft program coordinator and registered nurse, Nicole Pappas, BSN, RN. “Nicole, or ‘Nurse Nicole’ as Remi calls her, has really made an impact on our family,” said Kayla. “Remi can’t wait to see her when we say we are going to Shriners. Nicole always makes it a point to chat with Remi and makes her feel special.”
According to Kayla, Remi is a shy but spunky 4-year-old who turns into a chatterbox when she feels comfortable. She loves her teachers and classmates at her preschool and looks forward to her weekly dance and tumbling classes. Remi sees Dr. Lee yearly to assess her progress and determine when she is ready for the next phase of treatment. Cleft patients typically require an alveolar bone graft between 7 and 9 years old, a procedure that stabilizes a child’s upper gum ridge and provides support for their developing adult teeth.
Kayla remembers how overwhelming it felt to receive Remi’s diagnosis and has words of advice for other families. “It’s natural to feel scared, uncertain and upset, but it’s important to remember this is such a small part of your baby’s life,” said Kayla. “They will still thrive just like any other child.”
Above all, Kayla and Collin are grateful for the positivity and acceptance that Remi associates with Shriners Children’s New England. “Remi doesn’t have any friends or family members with a cleft lip, and she doesn’t regularly see anyone who has a scar like hers,” said Kayla. “But she has gotten to see her photo on a banner at the clinic and in a brochure for other families experiencing a cleft diagnosis. She even got to ride in a Shriners car in our town’s fall foliage parade. We love that Shriners Children’s not only cares for Remi but celebrates her for exactly who she is.”
Baby Remi shows her bright smile before cleft lip surgery.
Baby Remi sits in the grass.
Dr. Lee and Remi meet during a visit to Shriners Children's New England.
Remi lies down for a quick break on the playground.
Remi puts on a blue baseball hat to go with her Red Sox jersey.
With her backpack on, Remi is ready to leave for school.
