“And it shall be said, “Build up, build up, prepare the way, remove every obstruction from my people’s way.” Isaiah 57:14
Seven years ago, Kristin Patton was working as a speech-language pathologist at Vanderbilt when she began noticing a specific need among some of her patients.
Families who had a child born with a cleft lip and/or palate faced a new world of uncertainties as they tried to navigate all the corrective care their baby would need. The initial surgery to repair a cleft lip or palate (or both) is only the beginning of a series of therapies and procedures necessary to fully address the condition. Many children also require speech services, tubes in their ears, orthodontic work, or even jaw surgery.
“On average, a child with a cleft lip and palate needs seven surgeries,” Patton explains.
For parents, discovering the path of treatment, including which doctors and specialists to visit and in what order, is a complicated, unknown territory. Additionally, some families find their children could also benefit from counseling as they struggle with their physical appearance and feel different from their peers.
“I kept coming across moms and dads who wanted information on support following surgery,” Patton remembers. “They also desired community among other families walking the same road.”
In 2012, Patton and her husband, Chris (members at Christ Presbyterian Church), formed the organization Nashville S.P.E.A.K.S. as a response to this need. S.P.E.A.K.S represents the goal of Supporting Parents and Empowering All Kids to Succeed. Two years later, a missional community at Christ Presbyterian was born to come alongside the group and support its efforts to minister to the cleft community in the greater Nashville area.
The missional community is comprised of families from several different area churches throughout Middle Tennessee and is committed to offering support, encouragement and resources to families at various stages of the restorative process.
One key component to how the group functions includes hosting quarterly meetings where families can interact with each other as well as those in the medical community who are able to offer insight, guidance and support. To date, the group has invited a plastic surgeon, oral maxillofacial surgeon, family therapist, speech therapist and an ear, nose and throat (ENT) doctor to dialogue with parents about the best options for treatment and answer any questions they may have.
The quarterly gatherings also serve as a blessing for the children, who are able to see that they’re not the only ones facing surgeries or feeling different from everyone else. Patton says that at a prior meeting, a member of the missional community read a children’s book aloud about a turtle that needed surgery and visited the hospital. “One by one, the kids started shouting out that they’d had surgery and been in the hospital, too. You could see their faces light up when they realized they weren’t the only ones who’d had that experience,” she says.
The other aim of Nashville S.P.E.A.K.S. (MC) involves creating care packages for families of children with a cleft lip and/or palate. One package is designed to help with feeding issues and includes a specialized bottle designed for babies with cleft palate. These packages are distributed at Vanderbilt’s feeding, craniofacial and otolaryngology clinics.
The second care package is geared for families facing surgery and includes educational materials as well as fun items for parents and kids—bubbles, play dough, crayons and a Starbucks gift card.
The ultimate goal of the quarterly meetings and care packages is for families to know they’re supported and not alone and for the children to feel accepted, Patton explains.
“There are so many challenges to looking different when you’re a kid,” she says. “Children with cleft lip and/or palate have a higher risk for anxiety and social problems. We want to affirm their worth and cast a vision for a hopeful, bright future.”
She’s also thankful for the missional community’s ongoing opportunity to minister to parents.
“It’s overwhelming to learn that your child has this diagnosis,” Patton says. “We’re thankful that a growing number of families are learning about our missional community and reaching out for help. To see the Lord guiding our steps and bringing people to us is a beautiful thing.”
To learn more about this and all our other Missional Communities, visit christpres.org/missional-communities.