Patient Story: Two Years Old, Too Strong to Slow Down

March 27, 2018

Samantha and Richard Kolc have spent nearly 20 years together, seven of those as husband and wife.

 

For as long as they’ve been together, they’ve wanted nothing more than to bring a child into the world and grow their family.

 

After years of trying, they were unable to get pregnant. Then one day a little over two years ago, that all changed.

 

“It was the best news we’d ever received,” Samantha said. “We were absolutely ecstatic.”

 

Samantha was pregnant with a baby boy, whom they would name Nolan. Both she and Richard were overwhelmed with the excitement of becoming parents. Each day, they continued preparing to welcome Nolan into the world.

 

For several months, the pregnancy went according to plan and Nolan was growing as expected. But the day before Thanksgiving 2015, Samantha and Richard received an update that made them both uneasy and afraid.

 

An Uncertain Future

A routine ultrasound discovered that Nolan had a cleft lip and palate. According to the Centers for Disease Control and Prevention, isolated orofacial clefts – or clefts that occur with no other major birth defects – are one of the most common types of birth defects in the United States. One out of approximately every 1,000 babies is born with a cleft lip.

 

But Nolan’s case was different.

 

Nolan Kolc Before and After

“Nolan was born with a bilateral cleft lip and palate, meaning both sides of his lip and palate were affected,” said Lamont Jones, M.D., MBA, vice chair of the Department of Otolaryngology – Head and Neck Surgery and co-director of the Cleft and Craniofacial Team at Henry Ford Health System. “This is less common than cleft lip and palate on one side. We assembled a multi-disciplinary care team to provide Nolan with the best treatment possible."

 

The causes of orofacial clefts among most infants are unknown. Like many parents who face similar situations, she felt overwhelmed by the news.

 

“I just thought, ‘what did I do wrong?’” said Samantha, feeling that she had somehow caused the birth defect to happen. “But once we met with Dr. Jones, before Nolan was even born, we realized we have an entire team behind us. Something was wrong, but we had a team of experts who were right by our side to help us through it."

 

Samantha and Richard’s care team comprised physicians, nurses and medical support staff from across several different disciplines, including Genetics; Labor and Delivery; Nursing; Audiology; Speech Pathology; Ear, Nose and Throat; and Facial and Plastic Surgery.

 

“Every time we turned around, someone was checking on us, and that was so important,” Samantha said. “We weren’t just new parents. We were new parents whose baby had a facial abnormality. We had a lot of questions and if we needed something, they made sure we had it.”

 

A Happy Boy

Nolan underwent two surgeries within his first year of life. After the first, Samantha and Richard realized something important.

 

“We have a picture of him, taken just after his first surgery,” Samantha said. “He’s smiling as big as can be, and that was the moment I realized I was the one making a big deal about this. There he was, happy and smiling… he was perfectly fine."

 

At less than a year old, Nolan was already showing that nothing could stop him. And after his second surgery 10 months later, he would show that resilience once again.

 

“We were told that usually after these surgeries, babies need to stick to a liquid diet for a while. Nolan was not having that, and he let us know. He ate French toast and scrambled eggs the day after his surgery, which we thought was amazing."

 

A Family Made Stronger

Today, Nolan continues to see Dr. Jones, Vigen Darian, M.D. and other specialists for follow up appointments. By all accounts, he is a happy and healthy boy.

 

“He loves to read, and we recently got an aquarium with 10 fish,” Samantha said. “He’s constantly exploring and having fun. At a young age, he’s already overcome a lot. You would never know that by looking at him."

 

In addition to exploring, one of Nolan’s favorite things to do is sing with his karaoke machine – a Christmas gift from his care team at Henry Ford. Ever since he received it, he has been singing away.

 

For Samantha and Richard, the experience has brought them even closer as a family. For other new parents facing similar situations, Samantha has a few pieces of advice.

 

“Every case is individual and different. You have to be relaxed and go with the flow. Trust in your team and let them do what they are trained to do,” Samantha said. “Your story may not be exactly like ours. It’s going to take its own direction, and that’s okay."

 

While Nolan will continue to have follow up appointments throughout his teen years, Samantha and Richard know he is in good hands.

 

"How lucky are we? We have a great team. We have a health system that backs us. And we thank God to be where we are.”