Their baby struggled to breathe. This team helped save his life.

If you met Riggs Freeman today, you wouldn’t know that he was born with a rare congenital disorder, spent six weeks in the NICU for eating and breathing difficulties, and faced three surgeries before his first birthday.

Instead, you’d see a young boy who loves baseball, soccer, and playing along the Intracoastal Waterway near his home in Wilmington.

He owes his recovery to the multispecialty cleft and craniofacial team at Novant Health New Hanover Regional Medical Center, parents Heather and Phil Freeman said.

“In our minds, they helped save our child's life,” Heather said. “There’s no words that can thank them enough.”

Here’s their story.

A move, a pandemic and an ultrasound

On New Year’s Day 2020, Heather discovered she was pregnant with the couple’s first child. Just weeks into her pregnancy, the family moved to Wilmington for a promotion for Phil.

Then the COVID-19 lockdowns began. “It was a surreal moment for everyone,” Heather said. “We were in a whole new city where we knew one person. And with it being our first kid, we had no idea what to expect.”

Soon it was time for the 20-week anatomy scan – an ultrasound that checks for birth defects to ensure the baby is developing well. With COVID-19 restrictions, only Heather was allowed to attend the appointment in person.

Over FaceTime, Phil watched as the ultrasound technician looked at their baby, then “got kind of quiet.”

Soon, the technician left and returned with a genetics counselor who explained that the baby’s chin appeared underdeveloped – sloping back toward the neck, instead of jutting out. (A condition called micrognathia.)

Phil, who works for a medical device company, was aware of the term – and its risks. “They said it was like 10% of a normal chin,” Phil said. “And sometimes that can be a precursor to a lot of different issues.” Many of them serious.

A possible diagnosis and ‘six months of denial’

Heather and Phil were told that their baby might be the 1 in 8,500 born with Pierre Robin sequence (PRS) – a series, or “sequence,” of events in utero that impacts the development of the fetus’s jaw and mouth. In PRS, the fetus’s jaw doesn’t develop as it should, which displaces the tongue into the upper airway and allows an opening in the roof of the mouth (called a cleft palate) to develop.

Babies with PRS can have difficulty breathing in certain positions since their airway can become blocked. Many babies with PRS struggle to develop the suction that’s necessary for nursing or bottle-feeding, and burn a disproportionate number of calories working to breathe and eat. Some babies with PRS may require feeding tube supplementation. Severe PRS can be life-threatening, with possible complications such as respiratory distress, low blood oxygen or congestive heart failure.

Heather was referred to a maternal-fetal medicine specialist and began going for weekly appointments to monitor the baby’s heart. Otherwise, the couple were told to wait and see if their baby was born with PRS.

“We took the mindset, ‘There's nothing we can do until he's born. I don't want to sit here and hyperfocus on the worst scenario. We'll just deal with it when we get there,’” Phil said. “We were in six months of denial.”

Today, they know that they could have gotten more support – right there in Wilmington. But they didn’t know this yet.

A birthday, breathing difficulties and ‘chaos stabilized’

On Aug. 31, at Novant Health Betty H. Cameron Women’s & Children’s Hospital in Wilmington, Heather gave birth to a beautiful baby boy the couple named Riggs.

“The second he was pulled out, Phil and I could both tell his jaw was not normal looking,” Heather said. Then they were told he had a cleft palate. “We were like, ‘This is it then. It’s actually happening.’”

That night, Riggs experienced multiple drops in his oxygen level, indicating breathing difficulties. He was admitted to the hospital’s NICU, where the Freemans were told that a surgeon was coming to evaluate Riggs.

That surgeon was Dr. Michael Jaskolka – an oral and maxillofacial surgeon and craniofacial surgeon. That means he graduated from dental school, medical school and completed additional fellowship training beyond residency. He serves as the director of the cleft and craniofacial team for Novant Health New Hanover Regional Medical Center.

“The second Dr. Jaskolka walked in, I felt like all this chaos stabilized,” Heather said. “He had an amazing presence.”

A confirmed diagnosis

Jaskolka laid Riggs on his back on an exam table and started talking with the couple. As they talked, he caught them off-guard with an observation. Riggs’ chest was sinking in, or retracting, as he took breaths, indicating that he was working very hard to bring more air into his lungs. “Dr. Jaskolka said, ‘He retracted four times in the last minute.’ And I didn't even realize he was counting,” Heather said.

Jaskolka confirmed that Riggs had severe PRS, based on his anatomy and breathing difficulties. Some babies with severe PRS require immediate surgery to intubate them, Jaskolka said, but Riggs wasn’t there yet.

“Not all kids with a named condition are the same, so I try to be very conservative about intervening,” Jaskolka said. No surgeon wants to operate on a newborn unless it’s absolutely necessary. “We watch the kids with the NICU team, and let them ‘declare themselves.’ We see how they're doing with breathing and feeding, and observe them closely. If they demonstrate an inability to feed and difficulty breathing when their position changes, that means we need to do surgery.”

Top scores for safety in NC

Stretching a baby’s jaw

Soon, it became apparent that Riggs would likely need a surgery called “mandibular distraction osteogenesis” to help him breathe and eat properly. In this procedure, Jaskolka cuts the lower jaw and places devices called distractors into the jaw, securing them with a specialized pin. After surgery, the “pin” is turned 360 degrees several times a day over 7 to 10 days, “literally like the jack of a car,” Jaskolka said, which grows and stretches the lower jaw. As the jaw expands, new bone forms and the tongue is pulled forward, allowing for a more open airway.

The surgery would be safer for Riggs if they waited a few weeks.

“‘The bigger he is, the more resilient he'll be,’” Heather remembers Jaskolka saying. “We had a directive from him and a game plan: Beef him up.”

Jaskolka trained a team of NICU nurses on Riggs’s condition, care plan and the six-step process of feeding him with a special bottle. Riggs’s vital signs were constantly monitored to keep him safe. Heather and Phil were with Riggs every day, working with the nurses they called “The A-Team” to help Riggs grow.

The A-Team

Remembering the care Riggs received still makes the couple emotional.

“I love my child, because it's my child. But to imagine the kind of care that the NICU nurses had for our son – there’s no words,” Heather said.

Phil agreed. “They had 20 kids on their block that they were personally responsible for, including babies that are higher risk than Riggs,” Phil said. “Yet it felt like we were the only kid there that was being checked on.”

After four weeks, the Freemans and the team decided that Riggs was ready for surgery.

Surgery: ‘The most important day of that child’s life’

Heather and Phil, who were Division I college athletes when they met, share a similar mindset for getting through high-pressure situations: Just do it.

“We can either have this ‘worst fear, bad things will happen’ mindset, or we can kind of just get this done,” Heather said. “Riggs needs the best version of us to help him get through it.”

Jaskolka is also conscientious of his mindset heading into surgery. “My mentor would always reinforce that surgery is probably the most important day of that child's life, other than being born,” Jaskolka said. “It’s a huge sense of responsibility.”

After surgery, the team kept Riggs under anesthesia for five days to keep him from moving his breathing tube. Although they trusted the team, watching him lie motionless for five days was “silent torture,” Heather said.

During this time, the couple took a picture on a bench outside the hospital. “We said, ‘Let’s look back to this picture, a year from now, and realize that wow, we got through it,’” Heather said. “Just one day at a time.”

Two more surgeries

Jaskolka likes to involve families in their child's care, and taught Phil how to turn the pins in Riggs’s distractors to keep his jaw expanding. Phil turned on schedule, and the couple observed a strict infection prevention protocol.

On Oct. 12, after 43 days in the NICU, Riggs was discharged.

Although the Freemans had been parenting for two months, all of their experience had taken place in a 10x10 room in the NICU. Riggs had never seen the sun or felt the wind on his face. On his second day out of the NICU, the Freemans took him to the beach. “We were like, ‘We did it,’” Heather said. “He’s in the world.”

Before Riggs was discharged, the pins were removed, but the distractors stayed in place to stabilize his jawbone as it strengthened in its new shape. Four months later, Riggs’s jaw had healed enough that it was time for the distractors to be removed – another surgery.

Then, “all” Riggs had left to deal with was a cleft palate – which still created complications, especially for feeding. Riggs had to be positioned vertically every time he ate, and since he couldn’t create suction, the Freemans had to do that for him – squeezing a bottle that would squirt into his mouth to feed him. Once he began eating solids, they had to flush his nose out with saline spray during meals to make sure he wasn’t storing food in the opening of his cleft palate.

A month before his first birthday, Riggs had a third surgery called a “palatoplasty” to close the opening of his cleft palate. (He also had tubes put in his ears at the same time, which is a common practice during palatoplasty.) Following the surgery, he was on a liquid diet for three weeks – which meant he couldn’t eat cake on his first birthday.

At the time, Heather said, his procedures seemed endless – but looking back, that time is “a blip on the radar” that strengthened the couple’s relationship, built their empathy for others, and helped them learn to “not sweat the small stuff.”

Riggs today

Today Riggs is a rough-and-tumble boy who likes to fish, play with sticks and dirt, and swim – regardless of the temperature.

He recently got hurt at the playground – a minor injury, but it bled a lot. Phil and Heather sprang into action, hearing later from other parents who couldn’t believe how calm they had been.

“Maybe it's because we have been through so much already with Riggs. You can compartmentalize some of the things and realize, 'This is not big, this is big,’” Phil said.

Currently, the team doesn’t foresee any need for additional surgeries for Riggs. “His parents say you wouldn't even know he had any of these conditions – to me, that's one of the things that is most rewarding about this work,” Jaskolka said.

Lessons learned

Looking back, Heather wishes they had known that support and care were available before Riggs was born. Jaskolka frequently consults with parents who, like the Freemans, have had a concern identified prenatally.

When both parties are willing, Jaskolka also connects patients and their families. The Freemans have met with several families whose children have new cleft palate or PRS diagnoses, to provide support and share what they’ve learned along the way.

One thing they always share? Their gratitude for Jaskolka. “We're forever indebted to him.”