Harper's Story: Cleft Lip

Pediatric Care in Florida

Patient Story Highlights

  • Melissa and Creighton's baby girl, Harper, was born with a cleft lip, a common birth defect.
  • The couple sought help from the Johns Hopkins All Children's cleft and craniofacial team and found a supportive system.
  • Harper had her first cleft repair surgery at four months old and will require additional surgeries as she grows.

It was fall 2018, when Melissa and Creighton learned they were having a baby girl. The soon-to-be parents went through a whirlwind of emotions as they planned baby’s arrival. They were excited, but Melissa couldn’t help but wonder if the baby, like her, would be born with a cleft lip – a birth defect characterized by an opening in the upper lip, which can cause eating, speech and ear problems. Throughout her childhood, Melissa had several surgeries at Johns Hopkins All Children’s Hospital to correct her cleft lip. She never thought she would return to the children’s hospital she’d become so familiar with as an adult though.

It was at a 17-week anatomy scan, Melissa and Creighton’s world changed as they learned their baby would indeed be born with a cleft lip. “She called after the visit and was obviously shaken up over the news and I just reassured her everything was going to be OK,” Creighton says.

“Instantly, I blamed myself because I was like I’m sorry my baby has this problem,” Melissa says. “Deep down inside I still felt like it was my fault.”

Luckily, they found the help of the Johns Hopkins All Children’s cleft and craniofacial team and Alex Rottgers, chief of the division of plastic and reconstructive surgery at Johns Hopkins All Children’s Hospital, who says cleft lip and cleft palate are some of the most common birth defects the clinic sees. About 1 in every 1,600 babies is born with cleft lip with cleft palate in the United States, according to the Centers for Disease Control and Prevention (CDC).

Rottgers says it’s a luxury when the team can meet an expectant mom and her family early on to calm fears and answer questions. “This very likely is a perfectly normal healthy child, and that’s really what the parents need to understand. They may be coming into more doctors’ visits and their child may need to have one or multiple surgeries while they’re growing up, but otherwise they can expect to do normal things – they can play football and go to ballet lessons and everything parents would want for their child are in their grasp.”

The initial meeting was a sigh of relief for Melissa and Creighton. They got all the answers they needed from potential complications at birth to issues with breastfeeding and plans for baby’s first cleft surgery. “We couldn’t ask for a better support system,” Creighton said. 

Now, all they had to do was wait.

That following June, a perfect, healthy, 8 pound and 11 ounces baby girl named Harper came into the world. “That day was definitely a mix of emotions,” Melissa says. “I instantly fell in love with her and all my worries went away. She was perfectly imperfect." 

Just a few weeks later it was time for Harper’s first visit with Rottgers and his team. “When we met Harper we found she had a cleft lip and some notching of her gum lines, but the part of the palate used for speech was intact and that was actually really good news to give to the family,” he says.

At 4 months old, Harper had her first cleft repair surgery. Although a little anxious for their baby’s first surgery, Mom and Dad kept a positive attitude. They even posed Harper for a photo shoot before going into the operating room, as she lay in a mini hospital gown next to a board that said, “I get my forever smile today.” Nurses carried a happy, smiley Harper away as Melissa and Creighton waved goodbye.

After almost four hours in surgery, Harper returned to her parents’ arms after undergoing a successful cleft lip and nasal reconstruction surgery. Her scars continue to fade every day, but Rottgers says she likely will need additional surgeries as she grows, reminding all his families, it’s a journey.

“Cleft care is a process because while you’re operating on a baby you still have 20 years for them to grow up, for their face to develop, for new teeth to come in, and we find that the growth and development of the nose is one of the areas most affected by cleft lip and palate.”

Another aspect families may worry about is what life, and especially school, might be like for their little ones growing up with a cleft lip or cleft palate.

“Growing up for me, it was a little bit tough, kids were mean,” says Melissa, who remembers the whispers from kids wondering what happened to her lip growing up. It’s one reason, the Johns Hopkins All Children’s team includes psychologists and social workers who can help with discussions about overall development, school or family issues.

“For a child with a facial difference, bullying and stress can be extenuated and heightened,” Rottgers says. “It’s hard when children have something they can fixate on and tease them, and unfortunately, it’s something we deal with quite regularly. However, our team is very in tuned to trying to identify children and families who are struggling with stressors so we can get them the help and support they need.”

The team of doctors, nurses and therapists, not only help with conversations around bullying but also cover all aspects of care from ear, nose and throat issues to speech, hearing and feeding challenges throughout childhood.

“We love seeing our patients and watching them grow just like they’re part of our own family,” Rottgers adds.
“The team at Johns Hopkins All Children’s is simply incredible,” says Creighton. “We did a lot of research on the resources and the hospitals that were available in our area and it just happened to be right in our backyard, the best choice.”

As for Harper, her scars continue to fade every day, but she likely will need additional surgeries as she grows. Melissa and Creighton know it might not always be easy, but it’s part of the journey as a forever piece of the All Children’s family.

“It’s the best feeling in the world that one thing is behind us and now we can move forward, and she can start to be this strong-willed girl that she’s meant to be,” Melissa says.

Dad adds, “She’s just perfect."

Harper's Doctor

Cleft and Craniofacial Program at Johns Hopkins All Children's Hospital

The cleft and craniofacial team at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, treats patients with congenital and acquired abnormalities of the head and neck. The most common conditions we treat include cleft lip and palate, craniosynostosis, hemifacial microsomia, facial paralysis, and deformities of the ears and jaws.