Love and gratitude at the center of Evvie’s cleft lip and palate journey

Evvie was born with a cleft lip and palate

When Andrew and Karen Wu moved from their home in Manhattan to Manchester, New Hampshire, they were thrilled to be in closer proximity to Boston Children’s Hospital for their eldest daughter’s care. However, they had no idea just how fortuitous their decision would be until a few years later.

Pregnant with their third child, Karen learned during a routine ultrasound that there was something wrong with their baby. A follow-up test confirmed a cleft lip and cleft palate, and the Wus knew right away they wanted to go to Boston Children’s for further evaluation. “We were already familiar with the hospital because of our older daughter Marissa,” said Karen. “And we had also heard about the wonderful work and reputation of the Cleft and Craniofacial Center.”

Karen and Andrew met with Dr. Carolyn Rogers-Vizena, a pediatric plastic surgeon, and Olivia Oppel, a nurse and feeding specialist. “They helped put us at ease and assured us that we were in good hands.” Karen says.

To prepare big sisters Marissa and Olivia for a baby sister with a cleft lip, Karen showed them pictures and read books to them. “At first, they were worried the cleft lip would hurt their sister, but I reassured them,” says Karen.

A plan to repair Evvie’s cleft lip and palate 

On Aug. 20, 2017, Evelyn “Evvie” Wu was born. With a plan in place for her care, the family was well prepared for the upcoming surgeries she would need.

Three weeks later, the family regrouped with their care team, including Dr. Elizabeth Ross, a pediatric dentist. They confirmed Evvie’s treatment plan and mapped out the three surgeries she would need in the coming year.

Family wearing nasal elevators before cleft lip and palate surgery
Evvie wears a device called a DynaCleft Nasal Elevator to better position her tissue and bone for surgical repair. Her family wears matching devices in support of Evvie.

In Evvie’s first surgery on Dec. 7, Ross implanted a Latham device, a contraption that would pull Evvie’s gums and soft tissue together in advance of her second surgery. In this next procedure, which took place on Jan. 18, the Latham device was removed and Rogers-Vizena was able to perform surgery to correct the cleft lip. Then in early June, Evvie’s third surgery took place, with Rogers-Vizena repairing Evvie’s cleft palate and inserting ear tubes to prevent ear infection, which is a common ailment for children with cleft lip and palate.

Although her surgeries were successful, Evvie’s feeding routine was often disrupted, and she had to adjust to different feeding techniques. “After the first surgery, Evvie basically had to relearn how to feed and wasn’t able to take her normal bottle with the special valve,” Karen says. “We had to use syringe droppers for several days.”

A long journey defined by love and gratitude

The Wus were thankful for all the support they received during Evvie’s hospital stays. “Her whole care team was phenomenal,” Karen says.

Although Marissa and Olivia were not at the hospital, they were constantly thinking about their younger sister. “They love Evvie with and without the cleft,” Karen says. “They even asked me why Evvie needed surgery, because they thought she was perfect and adorable the way she was.”

Evvie after cleft lip and palate surgery
Evvie and her sisters

Now that her third surgery is complete, the plan is to wait and see how Evvie’s teeth come in before planning further treatment, since the majority of her care in the future will be dental work.

In the meantime, Evvie’s big sisters are busy looking after her. “Both Marissa and Olivia are great helpers,” Karen says. “They help with baths, feedings, diaper changes and love playing with Evvie.”

Learn more about Boston Children’s Cleft and Craniofacial Center.