Smile Together – Inspiring the World of Cleft and Craniofacial Care

While calling to reschedule her son’s annual appointment with the Duke Cleft and Craniofacial Center, Chrissy Wrede made a connection that has grown into an amazing non-profit, Smile Together.

Chrissy and Carlee Jones, Coordinator for the Duke Cleft Palate and Craniofacial Team, bonded quickly, both heralding the depth of care provided by the Duke staff, and its impact on patient’s families, including Chrissy’s. As they like to share, the two literally created Smile Together one afternoon in April of 2019.

Chrissy’s son, Austin, was born on World Smile Day in 2016, especially significant because Austin was born with a cleft lip and palate. With no history of a cleft condition on either side of their family, Austin’s condition was diagnosed at the 20-week ultrasound, and he was born with a unilateral complete cleft lip and palate. That means his lip, nostril, gumline and the entire roof of his mouth were not connected. Cleft lip and palate is among the most common congenital conditions, affecting one in 700 people – that’s one baby every two hours in the United States.

“The first year for these kids is tough,” Chrissy explains. “They can’t breastfeed, have to use special bottles and, at one week old, Austin was fitted for a special retainer for nasoalveolar molding (called “NAM”). The NAM helped bring his gumline together and shape his nose. He wore it 24/7 up until his first surgery at four months old. The first surgery repaired his lip and nose, but his palate and roof of his mouth remained open until his second repair surgery at 11 months old. We started Austin with solid food around six months, but not without challenges, as everything he ate went right up into his nose and eventually out with a big ol’ sneeze. Austin had a third surgery this past December at the age of eight to graft bone from his hip to his cleft and relocate his nasal septum. He couldn’t chew for more than six weeks or play with his buddies or throw the football with his dad – he had to give up a lot at a time when it felt unfair.”

Caring for Austin introduced Chrissy and her family to a supportive cleft community – one they want to continue nurturing. On their own, Chrissy and her family had raised funds to benefit the treatment of cleft conditions throughout 2017 and 2018, and by 2019, knew they could have a greater impact by partnering with the Duke Team.  

“Carlee and I created Smile Together so everyone can have an experience like ours and, more importantly, to advance the standards and techniques for future generations. Cleft and craniofacial kids have to face so much and do it with incredible strength and bravery. We celebrate that every day!”

Now a strongly supported, patient-focused 501(c)(3), Smile Together pursues a scenario where all barriers associated with cleft and craniofacial conditions are removed – and where children can reach their full potential. Their mission is to provide an equal opportunity and comprehensive services to all patients, despite background, culture or ability.

Donors can be assured that 100% of the proceeds received through the group’s efforts benefit the Duke Cleft and Craniofacial Center within the Division of Plastic, Maxillofacial and Oral Surgery at Duke University. Two robust labs there are dedicated to understanding, advancing and standardizing the clinical and surgical practice of cleft and craniofacial care. With consent, research is integrated into everyday clinical care at Duke, data is tracked, new collection tools are developed and networks are established between different centers to work collaboratively.

Mom Chelene Stone also shares her story: “In 2008, when we learned our baby would be born with a bilateral cleft lip, someone told me about a new ‘NAM’ program that had just started at Duke Children’s Hospital. We met with Dr. Marcus and members of their craniofacial team in January of 2009 before our son, John, was born that March. Every week, we made the drive from Hickory to Durham to see Dr. Santiago, and in October, John received his permanent smile. While middle school was difficult, he is now a thriving, self-confident freshman at Reagan High School. Smile Together is important because, even with medical insurance, the cost of providing care for a child with a craniofacial difference is expensive. Providing access and innovations for families is so important as well as bringing awareness, particularly in schools, about being kind to everyone!”

Clear from day one of Chrissy and Carlee’s mission, positivity is also key!

“We try to stay humble and thankful for everything we have, and Austin’s condition certainly falls within this philosophy. We don’t talk about him as different because he’s not, and we trust the process and follow the plan,” shares Chrissy.

For more information, visit smiletogether.gives or email [email protected].

Facebook
Pinterest
LinkedIn
Email

Subscribe to Our Newsletter

Stay up to date with our events and get exclusive article content right to your inbox!

Latest Stories

Other Featured Articles

Categories

All Article in Current Issue

Subscribe to our Newsletter

Stay up to date with our events and get exclusive article content right to your inbox!