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news News Thursday, April 26, 2018 Thursday, April 26, 2018 12:16 PM - Thursday, April 26, 2018 12:16 PM

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

A cleft journey

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

Baby Evan is growing rapidly as his family manages his bi-lateral cleft lip and palate. This infant from Northwest Indiana weighed just 10 pounds when he made his second visit to the cleft lip and palate team at Shriners Hospitals for Children — Chicago. 

Mary M. O'Gara, MA, CCC-SLP, director of the cleft lip and palate service and a speech language pathologist, spent time observing parents April and Michael feeding Evan during his visit. He is now using a specialty feeding bottle made by Dr. Brown's (creators of innovative baby products). The bottle’s nipple is designed to work for babies who have cleft lip and palate. “Twenty years ago, I met with representatives from Dr. Brown's and asked them to develop this nipple,” O’Gara said. “The flow is fast enough to allow a baby to feed without sucking, so called negative pressure sucking.”

In addition to mastering bottle feeding, April says she wants other parents of babies with a cleft to know that using pacifiers can be a challenge as well. “We don’t have the luxury of soothing our cleft children with pacifiers because they usually can’t keep them in their mouths,” April said. “This is an important message for parents. There are times for my husband and I, when Evan is crying and we can’t console him. Most parents just put a pacifier in their baby’s mouth. This isn’t something that can be done (when your child has a cleft) without the help of holding it in there.”

Since his first visit, Evan’s family has been applying special tape to their baby’s upper lip area. Nurse practitioner Marisa Foss, MSN, APN, CPNP, applied the DynaCleft taping the first time and trained the parents how to do it on their own. “Taping is important because it brings the edges of the cleft closer together, which eases tension on the incision and scar after the surgical repair. A patient will wear this nearly 24/7 until their surgical lip repair,” Foss said. Evan’s mom said the taping is going well since they got used to doing it. “It doesn’t seem to bother Evan and this treatment is easy to take care of. We didn’t use the taping treatment with our daughter, so every cleft has it’s differences.”

Evan’s doctor, Pediatric Plastic Surgeon David Morris, M.D., said she is happy with the progress so far from the taping. Dr. Morris will perform two surgical procedures this spring to reconstruct Evan’s upper lip.

Want to read more about Evan’s journey?

Shriners Hospitals for Children — Chicago will continue to share updates on Evan’s cleft lip and palate journey at our hospital in 2018.

A cleft journey | Baby Evan and Terilyn. Evan’s first visit to Shriners Hospitals

>Baby Evan, a cleft lip and palate patient, during his second visit at Shriners Hospitals for Children ― Chicago Evan with his mother and a Chicago Shriners Hospital physician for examination of cleft lip and palateDad holds baby Evan who is wearing the tape recommended for his cleft lip.