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news News Thursday, July 12, 2018 Thursday, July 12, 2018 3:00 PM - Thursday, July 12, 2018 3:00 PM

A cleft journey: Doctors at Shriners Hospitals for Children — Chicago repair Evan's cleft lip and nose

A cleft journey: Doctors at Shriners Hospitals for Children — Chicago repair Evan's cleft lip and nose

With happy tears, Evan’s parents and grandparents welcomed the 5-month-old after surgeons at Shriners Hospitals for Children — Chicago closed the cleft, or opening, in his lips. It was their first chance to see Evan’s new ‘forever smile’ and his mom, April, said it was “beautiful.” This special post-surgery face time moment is one parents in the cleft lip and palate program never forget. “There also is a sadness that comes over you when your child loses their very first big smile, that you got used to for four months,” April said. Fortunately it did not take Evan long to show off his new smile. “He was trying to smile that evening after surgery.”

See the video of Evan’s post-surgery reunion:

 

David Morris, M.D., a pediatric plastic surgeon who specializes in cleft lip and palate, performed two separate surgeries in April and May, and a follow-up nose procedure in June. In certain situations, surgeons may perform a two-part cleft lip repair in bilateral facial clefts (an opening in the face on both sides) when lip elements are widely displaced. The hospital team instructed Evan’s parents to apply special facial taping every day before surgery to reduce tension on their child’s tiny face before his first surgery, called a lip adhesion. “This is a preliminary attaching of the lateral lip elements to the central lip element in order to put them in a more ideal position at the time of the final lip repair six to eight weeks later,” Dr. Morris said.

Evan’s ears also received attention while he was in surgery. Arthur Curtis, M.D., an ear, nose and throat (ENT)-otolaryngologist on the cleft palate team at Shriners Hospitals for Children — Chicago, inserted ear tubes to eliminate fluid in the 4-month-old’s ears. This allows air in the middle ear to help him hear better. This is a condition very common in children with cleft lip and palate. (Learn more about the importance of ENTs and audiologists in children with cleft palate.) Surgeons at the Chicago Shriners Hospital make an effort to coordinate procedures to avoid placing children under anesthesia more than necessary. “We have a complete multidisciplinary team that is patient- and family-focused. There is extensive pre-surgical and post-surgical family teaching of how to care for the patient once he/she goes home. Good surgical results depend on meticulous aftercare,” Dr. Morris said.

“Dr. Morris made us well aware in advance that Evan's lip repair would entail several surgeries, so we had time to prepare,” April said. She described the results of the first surgery shortly after. “We knew this first step in his lip repair was not the final look. But Evan had the most beautiful full lips and his pre-maxilla was centered to his lips. It looked amazing for what we were told it would look like.”

Evan returned for his final lip repair surgery seven weeks later. Typically, plastic surgeons complete a repair of the nose segment at that time, but Evan’s lip was so raw, doctors decided to postpone that part. The family was back at Shriners Hospital 10 days later to have his sutures taken out and have the final nose procedure.

Evan and his sister

Advice for other families after surgery

“Evan's recovery was quite amazing when it comes to his incision and scarring. It looks great. But from an emotional standpoint, Evan's recovery was very difficult at times, especially when you knew he was uncomfortable and you couldn't do anything to help soothe him.” The family is sharing their story of raising two children who unexpectedly both had cleft lip and palate to help other parents who have a child born with a cleft and to raise awareness about the wonderful care they have received at Shriners Hospitals for Children — Chicago. Here are a few challenges they faced and what worked for their son following lip repair surgery.

Sleeping

Evan’s family went home with special feeding instructions and over-the-counter pain medication. “After surgery with the delicate stitches in his lip, Evan had to wear his “No-No”®s that prevent him from putting his hands in his mouth and affecting his stitches.” Dr. Morris said “No-No”s are soft, removable elbow immobilizers worn as a reminder to keep a baby’s hands out of their mouth. “Families can use them as appropriate after surgery,” he said. Mom slept with Evan in a recliner for several nights to further protect his stitches and prevent Evan from rubbing his face in the mattress as he typically enjoys doing.

Feeding

The family says learning how and what to feed Evan was a challenge for the two and a half months surrounding surgery. Their son’s feeding method and schedule had to change multiple times. “For the first couple of days (after surgery) he fought us to eat via the syringe. Then he realized that this is my only way to get food … my wonderful husband put together a syringe bottle made out of the syringe top and the Mead Johnson squeeze bottle. This creation was a lifesaver for both of our kids, as Michael designed it after Terilyn's surgery five years ago. It made the feeding for us, as the parents, much easier.” (See video of Evan’s feeding post-surgery.)

They also made the decision to delay introducing solid foods until all three surgeries were over. “By the time Evan could go back to his bottles and regular feeding, he was having another surgery and back on the syringe feedings. We also decided to hold off on feeding him solid foods until his surgeries were over so that we didn't have to take another thing away from him.” The family is now working on introducing solid foods into Evan’s diet.

The Nasal stent

“Evan's recovery from his nose repair was difficult at times because, like his sister, he needed to wear a nose stent.” Children wear the soft, silicone, removable appliance to help maintain the shape of newly positioned cartilage in their nose during the initial healing. Dr. Morris said it is similar to the nose plugs some kids wear at the swimming pool.

“He did well with it in his nose,” April said. “But putting it back in after it came out or needing a cleaning was very difficult for both Michael and I. I would have to hold him down while Michael put it in his nose and taped it. That was the most difficult part of the entire recovery process for both kids.”

Next steps

The family says Evan is doing wonderfully just a month after his procedures. The Chicago Shriners Hospital’s cleft lip and palate team will continue to provide customized care for Evan as he grows. Children born with a bi-lateral cleft lip and palate typically need eight to 10 surgeries as they grow to adulthood, to help close the lip and palate, and correct the mouth and jaw. Doctors say the number of procedures varies based on the particular patient and their anatomy. “We treat a lot of patients with clefts and we follow these patients into adulthood so we have the ability to follow our results very carefully long term and are able to modify our techniques as we see indicated to optimize results,” Dr. Morris said.

Evan before surgery and following two surgeries

Read more about Evan and Terilyn's story: 

A cleft journey | Baby Evan and Terilyn

Evan's second visit to Shriners Hospitals for Children — Chicago

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