Ryan Haeberle – Bilateral Complete Cleft Lip and Palate

Born with a bilateral complete cleft lip and palate, Ryan Haeberle was just 6 hours old when he was whisked by ambulance to UPMC Children’s Hospital of Pittsburgh.

Now, after 19 years of doctor appointments and multiple surgeries and procedures, he’s ready to say goodbye to his care team.

“I’m done,” says Ryan. “It’s been a long journey, but they did a great job. I really like how everything turned out.”

An Unexpected Diagnosis

Yvette and Darrell Haeberle never anticipated any problem when she was pregnant with Ryan, their second child. The family had no history of birth defects, and nothing had shown up during routine exams and ultrasounds.

“Everything was normal until the day he was born,” says Yvette.

When Ryan was born at New Castle, Pa.’s Jameson Hospital (now UPMC Jameson) in December 2002, doctors found he had two splits in his lip that continued into both nostrils to the roof of his mouth. It’s a birth defect known as a bilateral complete cleft lip and palate.

The Haeberles were told their son needed to be transferred to Pittsburgh for special care from the Cleft-Craniofacial Center team at UPMC Children’s. Because she had just delivered by Cesarean section, Yvette remained at Jameson. Darrell followed Ryan to Pittsburgh after first making sure things were OK at home, where their older son was being cared for by his grandmother.

“It was tough,” he says. “We were all supposed to be together. Instead, we were an hour apart and there was a lot going on.”

A Special Team

Babies who are born with clefts have trouble feeding. The cleft lip makes it hard to form a seal and a cleft palate makes it hard to create suction. At UPMC Children’s, Ryan was immediately fitted with a prosthetic device and given special bottles to use for feedings.

Two days later — after learning how to feed Ryan and maintain the device — the Haeberles were able to take their newborn home to New Castle, Pa.

When Ryan was 2 weeks old, they returned to Pittsburgh for their first official appointment at the Cleft-Craniofacial Center with specialists, including Matt Ford, MS, CCC-SLP, clinical coordinator and speech pathologist. They explained that Ryan would need surgery in stages to repair the defects.

“You initially think you just need to have the lip fixed. You don’t realize how much is going on inside the mouth,” say Yvette. “It was a lot.”

A Treatment Plan

Care for a child with a cleft lip and palate begins at birth and continues through early adulthood. The goal of treatment is to make sure they can eat and speak properly, hear normally, and have a normal appearance.

At Children’s, a multidisciplinary team of specialists — including plastic surgeons, pediatric dentists and orthodontists, speech specialists, otolaryngologists, and audiologists — works together to develop a coordinated, individualized care plan.

“We never doubted things would be OK,” says Yvette. “Knowing Ryan had this whole team to help him, we knew everything would be fine.”

While each baby has an individualized treatment plan, Children’s generally follows this timeline:

Age 3-6 months:

Cleft lip repair

Age 9-18 months:

Cleft palate repair
Insertion of ear tubes to aid fluid drainage
Assessment and start of speech therapy

Age 7-10 years:

Bone graft to repair the bony cleft in the child's gum ridge, followed by braces to straighten teeth

17-18 years:

Jaw realignment surgery
(Both done after growth is completed)

Ryan underwent all these procedures around those ages, but in his case, he needed additional procedures and surgeries:

Age 4:

Second cleft palate repair

Age 12:

Second bone graft

Ages 14, 16:

Dental surgery to remove teeth and insert brackets

Age 17:

Third cleft palate repair

“Every procedure was progress,” says Darrell. “I felt bad that Ryan had to go through so much. But he’s a real trouper. He didn’t complain or fuss.”

It took a team effort — by the specialists and staff at Children’s and the entire family — to get through all the procedures and recovery, adds Darrell.

“It was a family endeavor. We all did what we needed to do to support Ryan,” he says. “When he could only eat soup after a procedure, we all ate soup.”

A “Normal” Routine

Between ages 4 and 10, Ryan had no surgery. But he and his parents still went to Children’s every six months to meet with the Cleft-Craniofacial Center team. Seeing multiple specialists during a single visit rather than having to schedule separate appointments made it easier for the Haeberles, who live 75 minutes from the hospital.

“They are a great team. And we really appreciate their coordinated approach,” says Yvette. “Having all the appointments during one visit made it a lot easier.”

During his teenage years, Ryan needed a lot of dental work — including braces, palate expanders, and dental surgery — so he returned to Children’s monthly for appointments with pediatric dentist Brian Martin, DMD, and orthodontist Lindsay Schuster, DMD.

“It was all normal to me,” say Ryan of his surgeries and frequent trips to Children’s.

“But it was worth it. My teeth used to be crooked and poked out in the wrong areas. Now they’re straight and look nice. With the hole in the roof of my mouth and nose now closed, my speech improved and eating and drinking became easier.”

The End of a Journey

The Haeberles have met with a lot of specialists over the years, but Matt Ford has been their constant.

“It has been comforting to have Matt there from the very beginning to listen to us and explain things,” says Yvette.

When Ryan was 17, his third cleft palate repair was performed by the center’s director Jesse Goldstein, MD, a craniofacial plastic surgeon. At 18, Dr. Goldstein performed jaw surgery — known as Le Fort 1 maxillary advancement — to move his upper jaw forward. This was done to help his jaws and teeth fit together better.

“At Ryan’s post-op surgery appointments, Dr. Goldstein was beaming at how good he looked. You can tell he truly loves what he does,” says Yvette. “He’s a great surgeon.”

In April 2022 — 19 years after his birth — Ryan underwent his final surgery at the center. Dr. Goldstein performed a combined septoplasty and rhinoplasty surgery to reshape his nose and help him breathe easier.

Ryan is now looking forward to getting his braces removed later this year. With appointments and procedures behind him, he’s making plans for college and studies in computer programming.

For Yvette, it’s a bittersweet moment.

“It’s going to be tough saying goodbye. It will be an emotional time, especially for me,” she says. “I’m just so thankful to have this great team working together in one place. Everyone has been wonderful and they really seem to care about getting my child — and all the children there — back to where they need to be. Somehow saying ‘thank you’ doesn’t seem like enough.”

“They’ve done a great job at UPMC Children’s,” says Darrell. “The impact has been incredible. The fact that Ryan will be able to live an average, everyday life is amazing. We’re so grateful.”

Plastic Surgery Resources

Read more about plastic surgery resources from UPMC Children's Hospital Department of Plastic Surgery.