Theo, age 4, is fearless and a bit of a daredevil, according to his parents, Erik and Emily. The preschooler loves roughhousing with his 6-year-old brother, Henry, and jumping off the top bunk in his bedroom.
Anyone who’s witnessed Theo’s rambunctious energy and joyful personality might find it hard to believe the child’s life has been marked by frequent doctors’ appointments, regular blood draws and multiple surgeries for bilateral cleft lip and palate. Theo also has a rare bleeding disorder. He’s taking it all in stride.
“From watching him in action, you would never know that he's dealing with these difficult things,” shared Erik, of Scottsdale, Arizona. “It doesn’t seem to bother him – it’s just part of his routine. He's a normal 4-year-old.”
A troubling diagnosis during pregnancy
Erik and Emily went to her routine 20-week prenatal ultrasound excited to learn the gender of their baby. But they left shocked, anxious and upset after the procedure revealed that Theo would be born with a cleft lip and cleft palate. The couple turned their fear into action, researching baby Theo’s condition and learning what kind of care he would need.
“Emily is very strong,” Erik said. “After some tears and dealing with the feeling that this wasn’t fair, she went straight into supermom mode. She researched Theo’s condition and learned what our life would look like for the next couple of years. She assured me that, with the right care, Theo could have a normal life. We focused on what we needed to do and on being thankful that our son, otherwise, was healthy.”
The couple turned to Phoenix Children’s, where their older son previously received care. They knew this was a place they could expect world-class care for the whole family.
“We love Phoenix Children's, and we know from experience that the care patients receive there is the best,” Emily said.
Early diagnosis sets the stage for effective treatment
Three months before Theo’s birth in April 2018, Emily and Erik met with plastic surgeon Davinder Singh, MD, at Phoenix Children’s Center for Cleft and Craniofacial Care. The center, established more than 30 years ago as the Barrow Cleft and Craniofacial Center, is Arizona’s only accredited cleft and craniofacial center. The accreditation, earned through the American Cleft Palate Craniofacial Association, signals that Phoenix Children’s meets the highest standards of care for patients with craniofacial disorders.
The couple’s pre-birth consultation included meetings with other specialists who would be involved in Theo’s care, including a speech and feeding therapist, an orthodontist and a psychologist. The team gave Emily and Erik a binder detailing timelines for Theo’s future surgeries and information about caring for a baby with his condition.
“Meeting the providers during pregnancy not only prepares the parents medically, but also emotionally and psychologically for the journey they are going to undertake,” said Dr. Singh, chief of Phoenix Children’s Division of Plastic Surgery and co-medical director of the Center for Cleft and Craniofacial Care.
About cleft lip and palate
Cleft lip and cleft palate are among the most common birth defects, and feeding is the biggest concern because these babies don’t have the ability to suckle, Dr. Singh explained. The challenges are multiplied when their condition is bilateral, like Theo’s. Interventions to help these babies eat may range from a cleft-adapted bottle to a feeding tube.
After Theo’s birth in April 2018, he had weekly appointments at the center for several months. They monitored his feeding ability and weight gain and assessed him for upcoming surgeries. Fortunately, he faced no significant feeding issues and therefore thrived.
Initial surgery reveals complicating factor
To prepare Theo for his lip repair procedure, Patricia Beals, DMD, craniofacial orthodontist and co-medical director of the center, began nasolabial molding when he was just a few weeks old. This nonsurgical technique reduces the cleft size and improves alignment of the lip and nose, ensuring better long-term results.
When Theo was about 4 months old, Dr. Singh performed surgery to repair his lip and nasal region. During the procedure, Dr. Singh noticed that Theo was bleeding more than normal. She and the operating team completed Theo’s procedure safely, but it was important to find out why he was bleeding excessively and prevent potential complications.
Dr. Singh referred Theo's family to Phoenix Children’s Center for Cancer and Blood Disorders (CCBD). After about six months of testing, Theo was diagnosed with Glanzmann thrombasthenia, a rare bleeding disorder that hinders the production of platelets – substances in the blood that aid in clotting. Because of this condition, the hematology team is now involved in every surgical procedure Theo undergoes, administering medications to control his bleeding.
When Theo was 10 months old, Dr. Singh performed surgery to close the roof of his mouth. And last August, at age 4, he underwent a second palate procedure to improve his speech. This involved taking a small amount of tissue from the inside of Theo’s cheeks to extend his soft palate. Theo also works with speech therapists at Phoenix Children’s and at his preschool.
Facing future treatments
Like most children with cleft lip and cleft palate, Theo will need additional surgeries as he gets older. The next planned procedure, alveolar bone grafting, will take place when he is around 8 years old. Dr. Singh and her team will take a small piece of bone from another part of his body to build a stronger gum line around the repaired cleft lip. This will help support his permanent teeth.
Dr. Beals and the orthodontic team at Phoenix Children’s will closely monitor the growth of Theo’s jaws and teeth. If his upper and lower jaws don’t grow at the same pace, he may need surgery during his late teens – once his growth stops – to realign them.
Erik and Emily are grateful to be kept informed every step of the way.
“The team at Phoenix Children’s is good at communicating with each other and with us about the game plans for Theo’s procedures,” Erik said.
Supporting self-image
Children born with a cleft lip and cleft palate can face problems with self-esteem and confidence as they grow older. Dr. Singh and her team strive to create a natural shape and minimize scarring.
“We do our best when they're newborns to mold and reposition the nose so that, after surgery, there’s healing with narrow scars and good forms,” Dr. Singh explained. “We try to give them the best aesthetic result possible.”
The care team includes psychologists who not only support parents, but also offer emotional support to the children as they grow up.
“Kids will go through transitions emotionally as they become more aware – as they get feedback from society,” Dr. Singh said. “Theo's personality is radiant and positive. I’m hopeful that he will face those struggles with confidence as he gets older. And we have a team ready to support him.”
Theo continues to thrive
Despite the challenges he’s faced, Theo is thriving. Erik describes the preschooler – who will turn 5 in April – as an energetic “wild man.” He and Henry are partners in crime at home, making life an adventure for their family.
Emily is grateful for the Phoenix Children’s community, which includes Theo’s medical team, as well as other families whose children have craniofacial differences. The Center for Cleft and Craniofacial Care hosts social activities, allowing families to meet and share their experiences.
“It’s been wonderful getting to know other families going through many of the same issues we’ve dealt with,” said Emily, who serves on the CCBD Family Advisory Board. “The team at Phoenix Children’s does an incredible job.”
“Dr. Singh is magical with her surgeries,” Erik added. “She is special with Theo and does a great job of making him feel comfortable. And the nursing team at Phoenix Children’s is second to none. They have a lot of patience when you're on edge and support you through it. They truly care about the children and their parents.”
Learn more about Phoenix Children’s Center for Cleft and Craniofacial Care here. Our multidisciplinary team provides a lifetime of care for your child and the whole family.