Capture that original smile before it’s gone!
That’s the advice shared by parents who have a child born with a cleft lip and/or palate. 
Sarah’s son Beau was born with a bilateral cleft palate. Beau had trouble breathing at birth and also needed a feeding tube. Sarah and her husband Gill turned to Shriners Children’s Boston and immediately knew they had found the right place to treat their son. Six years later, after several surgeries, Beau is thriving. The family is grateful for their son’s treatment.
Still, “I miss Beau’s original smile so much,” says Sarah, who is grateful she still has many baby pictures of her son.
Annalisa is a mother of four, three of whom were born with a cleft. Her sons Jaxon, Dallin and Landon receive care at Shriners Children’s Southern California. “Falling in love with two smiles is such a blessing,” she says.
–Rachel Bishop, M.D., DD
“I tell all my patients to take a ton of baby photos because the cleft smile is very unique,” explains Rachel Bishop, M.D., DDS, a specialist in cleft and craniofacial surgery at Shriners Children’s Shreveport. “It is big and wide and welcoming. And when we close those clefts, they just look like a normal lip. Families do miss it.”
Annalisa’s three eldest boys, left to right, Dallin, Jaxon and Landon, had cleft repairs. Now they can’t stop smiling at baby brother Hayden!
A hallmark of Shriners Children’s care is a dedicated team approach. Experienced, innovative specialists create tailored care plans and collaborate every step of the way. Patients with a cleft often receive care from surgeons, dental professionals, speech and language therapists, and dietitians.
Combine our teams’ expertise with the environment of our facilities, where families share their experiences with each other, and you see what makes Shriners Children’s care unique. Our families don’t need to go it alone.
Our parents and staff offer this advice to families with an unborn or newborn child with a cleft.
Get a prenatal appointment
There is so much to know and prepare for, and it helps to start learning early, advises Dr. Bishop. At her prenatal consultations with parents, she goes over what to expect when the baby is born, whether the child will need a special bottle to feed and approximately how many surgeries may be needed.
“In most prenatal consults I see, the mom is usually very tearful, and the dad is apprehensive. Most of the apprehension comes from not knowing what to expect,” she says.
Be open and be brave
“Don’t be afraid to take your child out or post pictures of them or talk about what they are going through,” Sarah says.
Being open provides as much of a lesson for the child as it does for those outside the family, say April and Michael, who have two children seen at Shriners Children’s Chicago. “One thing we pride ourselves on is building confidence in our kids,” April says.
People will stare, acknowledges Annalisa. “Try to make it a positive interaction. I use it as a time to inform. I tell them, ‘Yep, one in 300 babies has a cleft,’” she says.
Recognize the cleft is not your fault
“When I first heard that my kid would be born with a cleft, I thought, what have I done wrong,” Annalisa says. “But now, I would say to another mom, it is not your fault.”
Clefts happen due to a combination of genetic and environmental factors, usually impossible to identify in any one case. Annalisa now says: “There is nothing I would do to change anything at all.”
Trust yourself and be prepared to advocate
Children born with a cleft lip and palate can face multiple challenges with breathing, eating and speaking. The medical journey can seem like one hurdle after another.
So, sometimes, you, as the parent, have to be assertive to ensure you are getting the answers that you need, Sarah, April and other parents advise. At Shriners Children’s, comprehensive care teams are adept at providing information in a thorough and compassionate way. Even so, it’s important to speak up.
“It’s very easy for medical professionals — especially if they don’t know you — to speak about what is or isn’t in a textbook,
or what they’ve seen in their practice,” says Sarah, who is a registered nurse. “And, I think that is fair on their behalf. But you know your kid better than anybody,” she says.
Develop a good support system
“Find your family,” says Barbie, whose twin teenage sons, Ty and Colton, see the cleft lip and palate specialists at Shriners Children’s Ohio. She suggests searching Facebook and elsewhere online to find support groups.
Twin brothers Ty and Colton are looking forward to new adventures after successful cleft treatment at Shriners Children’s Ohio.
“I have friends I’ve known for 14 years,” Barbie says. “Some I’ve never met in person. But we’d do anything for each other.”
Dr. Bishop says that at Shriners Children’s, support is almost built in. She recently had two families, both going through a lip repair on the same day and then a palate repair on the same day. The families connected and supported each other.
“We can link people up with someone who has already gone through it if they just want to talk,” Dr. Bishop says.
Be prepared: Surgery does not get easier
Children with a cleft often need multiple surgeries. It would be nice if it became easier as kids get older. Unfortunately, it doesn’t.
“It’s tougher when they are older, and understand and ask questions,” April says.
What’s a parent to do when their child is preparing for yet another procedure? “The most important thing is having them know another kiddo who is going through what they are experiencing, even if it is not identical,” Dr. Bishop says.
The Most Amazing Care Anywhere
Lastly, consider getting care at Shriners Children’s.
“From the moment you enter the door at Shriners Children’s, you are greeted with a smile and joy,” Dr. Bishop says.
Sarah says being at Shriners Children’s with Beau is a “no-brainer.” She saw how hard Beau’s physician worked through each struggle and complication.
“I thought, ‘This guy really cares about my son,’” she says.
Every smile tells a story, and at Shriners Children’s, we’re honored to be part of each one.
LEARN MORE about cleft lip and palate care at Shriners Children’s. Visit shrinerschildrens.org/en/pediatric-care/cleft-palate
