Katie Krist met the surgeon who would operate on her son before she met her son.
Krist and her husband Jeremy had been matched through an adoption agency with an 18-month-old boy in China. The toddler had a cleft lip and palate and other medical needs, and the couple met with UNC Health pediatric otolaryngologist Lauren Leeper, MD, to make a plan for when they brought him home to North Carolina.
During that 2019 meeting, Krist showed Dr. Leeper photos of the baby boy provided by the adoption agency. The two sides of his upper lip split up toward his nose rather than coming together in the middle. He was tiny, even for his young age, because it was difficult for him to eat.
Dr. Leeper saw his craniofacial challenges and also that he was simply a very cute baby.
“She just gabbed about how beautiful of a child he was,” Krist says. “It gave me permission to see he was beautiful, just the way the Lord made him and just the way he was. We’re going to have surgery for his quality of life, but he’s already perfect.”
Today, Nolan Krist is a 7-year-old first grader whose medical concerns are just one part of his big, fun life. But it’s been a long journey in more ways than one.
Bringing Nolan Home
The Krists decided to adopt their third child after having two biological sons, Landon, now 14, and Owen, 11. Jeremy is a public school teacher, and Katie is a neonatal nurse practitioner (she does not work for UNC Health). Katie was moved by the adoptions she witnessed at work; the family has friends who had positive experiences adopting internationally.
The Krists connected with an agency in China that asked them to consider what kind of medical needs they felt they could handle.
“There was an understanding that there would be health challenges with any child we adopted,” Krist says. “They tell you everything they can, but they don’t know every medical need.”
They matched with Nolan, who was living in an orphanage of about 750 children in southern China. There was one caring but outmatched caregiver assigned to about 20 babies, and Nolan didn’t get much one-on-one attention. He had developed strategies, such as aiming a bottle or spoon at the side of his mouth, in an effort to keep milk and food from falling out. He weighed just 17 pounds at 18 months old, when a typical baby boy that age is about 24 pounds.
In March 2019 Katie and Jeremy left for China, where they stayed three weeks before bringing their third son home. The family had another three weeks at home before his first surgery with Dr. Leeper. They spent that time working to earn Nolan’s trust and help him eat; this was a huge challenge as he found eating uncomfortable and even frightening.
His older brothers chose the name Nolan; they kept his Chinese name as his middle name.
Closing the Cleft Lip and Palate and Facing Feeding Challenges
A baby can be born with a cleft lip, where the lip and nose don’t develop normally, a cleft palate, where part of the roof of the mouth is missing, or both conditions together—just like Nolan.
Some parents learn about their child’s cleft lip on ultrasound during pregnancy, but a cleft palate cannot commonly be seen in utero, Dr. Leeper says. “The overall chance any baby has a cleft of any kind is about 1 in 700.”
Cleft palates make feeding difficult for babies because the palate is needed to create suction for drinking out of a bottle or the mother’s nipple. A baby with a cleft palate typically cannot breastfeed or use a standard bottle, but a speech-language pathologist can work with a family to develop strategies and recommend special bottles and nipples. A baby with an isolated cleft lip can usually nurse or drink from a regular bottle, Dr. Leeper says.
Typically, surgery to close a cleft lip happens when the baby is about 3 months old, and the cleft palate surgery happens between 9 and 12 months old. Repairing the palate by age 1 is important as babies begin to talk around that age, leading to the best speech outcomes, Dr. Leeper says.
Parents are often alarmed when they find out their baby has a cleft, but Dr. Leeper reassures them that good things are ahead.
“I tell parents that the first year of life is going to be busier than other babies, but our goal is for them to do everything on the same timeline as any other baby. And for any baby, the first few months are simply about feeding and growing,” she says.
Because Nolan was already 18 months old when he came to the United States, Dr. Leeper performed his lip and palate surgeries together in a marathon eight-hour session.
The Krists were worried about the length of the surgery because the adoption agency had told them that Nolan had a ventricular septal defect, a hole in his heart.
“We didn’t know if this sweet baby would tolerate the anesthesia, how he would do with IV fluids and so forth,” Krist says. “So there was anxiety—he was in the operating room for so many hours, but Dr. Leeper and her team got us through it, and he did great.”
After the surgery, Nolan’s mouth was sore, and he was even more reluctant to eat. Feeding and speech specialists at UNC Health worked with him and his parents to develop strategies to feed him while reducing his discomfort and fear.
“It was an all-day event just trying to get food into Nolan,” Krist says. During their three-day hospital stay, “he finally took a cup from me for the first time, and there was not a dry eye in the room because we knew he could go home if he would finally trust us.”
Dr. Leeper diagnosed Nolan with hearing loss and performed two ear tube surgeries on him. When he was 3 years old, he got hearing aids that he still wears today. His speech abilities skyrocketed with the aids and ongoing speech therapy, Krist says.
UNC Health doctors also discovered Nolan has high blood pressure and that his pancreas doesn’t work as efficiently as it should, resulting in delayed growth. Both conditions, unrelated to his cleft lip and palate, are being treated and monitored with regular visits with specialists. The hole in his heart isn’t causing symptoms and has gotten smaller, and it may close with time.
“We get to see a little of everybody at UNC: ENT, nephrologists, cardiologists, audiologists, gastroenterologists… and everyone communicates so well about whatever procedure or new diagnosis Nolan has had,” Krist says.
A Bright Future for Nolan and His Family
Like other children with a cleft palate, Nolan will have one more surgery to close the front part of his palate, where his tooth arch is. Doctors wait until that age because a bone graft is used, typically taken from the child’s hip, and the graft holds best if permanent teeth grow through it, Dr. Leeper says. This usually happens between ages 7 and 10; Nolan will likely be at the higher end of the range because of his slower growth.
He will always be on the smaller side but is now officially on the pediatric growth chart, in the 2nd percentile, which his mom calls “a major victory.”
Some children or adults with cleft lip and palate undergo additional surgeries to fix functional or cosmetic issues, such as surgery on the nose to improve breathing and appearance.
So while his medical journey isn’t over, Nolan is living his life like any other first grader. He loves his big brothers, school, cars, airplanes, trains and french fries.
“Nolan is thriving,” Dr. Leeper says. “Feeding for him was a really scary experience when they first adopted him, and now you would never know that if you watch him with Chick-fil-A.”
His family is especially tickled by his confidence. “He tells people, ‘I can shoot a noodle out of my nose,’” Krist says. “He thinks it’s amazing.” (That hidden talent will be a thing of the past when he has his final palate surgery.)
As for speech, when he first came home, he didn’t even babble, but today, “we can’t get him to stop talking. We often say, ‘Hey, Nolan, we just need a minute,’” Krist says. “He is the little ruler of our house.”
Nolan’s lip scar has healed, but like others with cleft lip and palate, his facial features remain distinctive to those familiar with the condition. Sometimes strangers stop the family in public and say they too had cleft lip or palate surgery as a child, Krist says. So far, Nolan doesn’t mind the recognition.
“We get to celebrate Nolan’s differences rather than trying to hide them,” she says. “It’s given him permission to celebrate them too.”
If you have questions about your child’s health, talk to your doctor or find one near you.