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news News Friday, January 19, 2018 Friday, January 19, 2018 1:52 PM - Friday, January 19, 2018 1:52 PM

A cleft journey: Baby Evan and Terilyn

Evan's first visit to Shriners Hospitals

A cleft journey: Baby Evan and Terilyn

Michael and April knew their son Evan would be a special child even before he was born. They called him “Baby Miracle” after enduring multiple miscarriages since the birth of their older daughter. The Indiana parents were shocked when an ultrasound indicated that Baby Miracle would likely be born with a cleft lip and palate. The news was especially emotional because their 5-year-old daughter has the same condition.

After processing the news, April made a phone call to Marisa Foss, MSN, APN, CPNP, nurse practitioner at Shriners Hospitals for Children — Chicago.  “When I called to say we were having a second child with a cleft palate, Marisa spent 45 minutes on the phone with me, calming my nerves, and answering my questions about what to expect,” April said. “It melts my heart and makes me cry to think of it.”

Baby Evan entered the world on November 28 with a bilateral cleft lip and palate. According to the American Cleft Palate Craniofacial Association, they are one of only 2-5 percent of cases where a family who already has a child with cleft palate has another child born with the same condition.

The family was so pleased with the care and support their daughter received at the Chicago Shriners Hospital that they've decided to share Evan's medical journey to help other families find hope after a cleft diagnosis, and help other parents learn about the care that may be available for their child.

Dad said knowing what to expect was very helpful after Evan’s delivery. “At the hospital after Evan was born, one of the physicians was nervous about his condition. I had to tell him like three times, we’ve done this before,” said Michael. Evan spent time in the neonatal intensive care unit at his local hospital receiving oxygen. Nurses expressed concern about Evan’s first feeding with a bottle due to his cleft palate, something the staff at Shriners Hospitals finds is common. “Parents may face a labor and delivery or postpartum team that is scared or uncertain about feeding a child with a cleft lip and palate. The parents may have to help put the special bottle together for them,” said Michael. “We started teaching the other nurses. The point is education, so they learn and can help other families who have a child born with cleft.”

The staff at Shriners Hospital had encouraged the parents to try to feed with specialized bottles. In Evan’s case, they used a pigeon feeder type bottle. “We’ve been blessed for it to be a typical newborn situation. It could be so much worse,” said April. “Both of our kids adapted to feeding right away. They didn’t need a feeding tube.”

Evan’s first visit to Shriners Hospitals

Sarah Richards talks with April at Evan's first appointmentA discussion about feeding was part of Evan’s first comprehensive visit to the cleft palate team at Shriners Hospital, which welcomed him in December 2017 when he was just weeks old. The family and Evan saw two nurse practitioners, the director of the cleft palate service, a psychologist, social worker and speech language pathologist Sarah Richards, MS, CCC-SLP. “I’m evaluating feeding techniques and success, as babies with a cleft need to use specialized bottles that do not require the use of oral pressure. So I’ll ask them which one their child is using and evaluate if that’s working for them. If it is not working, we try different bottles that might be more successful during their team visit. We also talk about the position of how the baby is fed, how often feedings occur, and how long feedings last,” Richards said.

“I also help to educate parents about some of the sounds the baby cannot make before the palate repair.  He will have difficulty producing the high-pressure consonants such as P, B, D, or T. In addition, I tell parents to not encourage the child to say those sounds, so no “Da da” (Dads don’t like that one). Because the child will come up with clever and inaccurate ways to try to say those sounds. And those incorrect early speech patterns will have to be worked on later in speech therapy.”

April said they kept that in mind while choosing Evan’s name. Big sister Terilyn, age 5, still receives speech therapy following her cleft palate repairs. “Terilyn is doing well. She can say V, but not T. So she refers to herself as ‘erilyn’. We intentionally chose the name Evan without a T or a D for this baby so Terilyn can say it, and so Evan can say his own name in the future”

Evan also met his future plastic surgeon, David Morris, M.D. who discussed the child’s care plan in the months and years ahead at Shriners Hospitals for Children.

“Having a second child at Shriners Hospital is becoming a more emotional journey for me. I don’t know why,” said April. “On a positive note, our daughter will be able to see what she went through. We were not expecting to go through it again. But there is peace of mind and faith knowing there is no doubts with the amazing team here.

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

Evan's second visit to Shriners Hospitals for Children — Chicago
Audiologists and ENT surgeons are important part of cleft palate care
A cleft journey: Doctors at Shriners Hospitals for Children — Chicago repair Evan's cleft lip and nose
A cleft journey: Cleft team monitors Terilyn’s speech, hearing and development

Michael, April and Evan at first appointment Evan's first feeding at his appointment

Pictured: (top right) Evan at the first family appointment; (top left) Sarah Richards talks with April at Evan's first appointment; (bottom left) Michael, April and Evan at first appointment; (bottom right) Michael feeds Evan at first appointment

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