“It can be scary having a kid with a cleft. Knowing you have that support system in place makes things a little less scary.”
By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org
When Caitlin Church greets a new patient in the Cleft and Craniofacial Department at Riley Hospital for Children, she knows she can relate on a personal level to many patients.
The same can be said for Jodie Skinner, Cara Drake-Luecking and Ellen Randall.
Four Riley team members, four unique stories related to cleft lip and palate. Each part of the cleft and craniofacial team, and all using their experiences and their expertise to provide compassionate care to patients and their families.
July is National Cleft and Craniofacial Awareness & Prevention Month, a time to raise awareness of a congenital condition known as cleft lip and palate. Cleft lip is an opening in the upper lip; cleft palate is an opening in the roof of the mouth. Children can be born with one or both of these conditions, which occur jointly in about 1 in every 1,600 births.
Caitlin Church, coordinator of Riley’s Cleft and Craniofacial Program for the past seven years, was born with both conditions, as well as craniosynostosis, a birth defect in which the bones in her skull joined together too early, resulting in a misshapen head.
She had so many surgeries at Riley over the years her parents joke today that they could still drive to Riley from their Warsaw, Indiana home in their sleep.
CAMP ABOUT FACE
Church, who now lives in Brownsburg with her husband, Ben, and their dog, Lady, remained involved with Riley as a camper with Camp About Face, then moved into a mentor role at the annual camp, which has been paused for the past three summers due to Covid-19.
Landing the coordinator position at Riley was a dream come true, and being able to work with patients and families who are traveling a road similar to hers brings her true satisfaction.
“It’s important for us to show families what it looks like – in my case 30- some years down the road – after you’ve had your cleft lip and cleft palate repaired, that you can have a successful and great life,” she said.
But she understands how overwhelming it can be at the beginning. She may not have memories as a baby, but her parents sure do. It’s hard to see your child go through multiple surgeries, in addition to intense speech and feeding therapy.
That’s why she loves Camp About Face so much and why it pains her that kids have not been able to gather for the weeklong overnight camp at Bradford Woods for three years now.
WALK ALONGSIDE PARENTS
“For me, it’s important to give kids the same experience I had with camp. It was a great influence in my life,” she said. “For team members who are parents, it’s important to them that they can be there for other parents to walk alongside them. It’s powerful to have somebody walk that with you who has already been down that path before.”
Someone like Cara Drake-Luecking, whose husband, Eric, and son, Miles, both were born with cleft lip and cleft palate. The Center Grove couple’s 13-year-old daughter does not have the condition.
The speech pathologist met her husband-to-be at Camp About Face when she was working there during grad school and he was volunteering. She has worked at Riley for 16 years, most of that time with cleft patients.
Speech pathology is critical in patients’ care, she said, focusing on not just speech and language development, but also feeding and swallowing.
When Miles was born 10 years ago, Drake-Luecking had a definite advantage.
“I knew the doctors and nurses well. And my expertise in feeding and swallowing was definitely a benefit in the first several years of his life, as well as my connections with people who could help us.”
Being able to call co-workers for advice late at night when she was worried about her son was a blessing. He had three surgeries in his first year of life.
“I think about that when I’m working with families, and I try to make sure they’re doing OK.”
GRATEFUL FOR CARE
As Miles has gotten older, her husband has been a great resource for both her and their son, specifically when it comes to navigating school, peers and future surgeries.
“We are incredibly grateful for the team of doctors and nurses, dietitians, feeding specialists, the entire craniofacial team,” said Drake-Luecking, who primarily works with patients in the NICU.
Among Miles’ care team are surgeon Dr. Sunil Tholpady and orthodontist Dr. Tasha Hall.
“When I was pregnant with Miles, people would say, ‘he’ll have surgery and then he’ll be fine.’ What they don’t see is that cleft care extends into early adulthood,” she said. “So having a team we can go to at any point in his life and say these are our concerns, and knowing we have a surgeon who will take the time to sit down with us and review options is encouraging.
“It can be scary having a kid with a cleft,” she added. “Knowing you have that support system in place makes things a little less scary.”
Miles, who is headed into fourth grade, has what his mom calls a BIG personality. She and her husband were as disappointed as Miles was when Camp About Face had to be canceled for the third year due to a Covid outbreak.
“You never have to guess how Miles is feeling,” she laughed, describing him as “incredibly loving and empathetic” and a jokester.
SURPRISE DIAGNOSIS
Jodie Skinner, nurse coordinator on the cleft and craniofacial team, also has a 10-year-old son who was born with a cleft lip and palate. Her third child was supposed to be the easy one, the experienced mom and nurse thought.
The diagnosis at her 20-week ultrasound came out of nowhere.
The family lived in Ohio at the time, so Skinner got busy researching medical care for her youngest, Luke. She found an excellent program at an Ohio children’s hospital, where Luke had multiple surgeries.
Since moving to Indiana, she has been looking for an opportunity to give back some of what she has been given over the years – knowledge, care and compassion. She found that opportunity a few months ago when a position opened on Riley’s cleft and craniofacial team.
“It’s a job but also a passion,” she said. “It’s been my world, so walking in those clinic doors, it’s kind of like a second home.”
Skinner says she sees her experience and that of others on the team as added value for patients and families.
“I really understand how hard it is to go through all those surgeries,” she said, adding that she has shared a bit of her personal story with a few parents as a way to encourage them.
“I was in their shoes 10 years ago. The first year tends to be the hardest. It does get easier, but at that moment it can be very stressful, and there are lots of obstacles to overcome.”
MISSION IS PERSONAL
Every patient and every family’s journey is different, of course, something Ellen Randall keeps in mind as a physician assistant on the craniofacial plastic surgery team.
She was born with cleft lip only, which required less surgical intervention than patients with cleft lip and palate. She was treated at Riley in the 1990s, she said, and believes her exposure to plastic surgery as a child influenced her to go down a similar career path.
While she occasionally shares her personal story with parents, “I’ve learned from working here that I need to be mindful about what my cleft story looks like compared to other patients,” she said, adding that she was fortunate to have needed just three surgeries.
Still, she said, “I think it’s helpful for parents to see people like their children represented on their healthcare team.”
That’s exactly why Church is proud that the Riley Cleft and Craniofacial Department has so many team members personally affected by cleft.
“We can definitely turn our life experiences into something really positive. It personalizes our mission of providing great care to our families.”
Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org
