Colton faces his health challenges with a smile

Now 22, Colton has faced many health obstacles since birth that have affected him physically, mentally and emotionally. While it would be easy to feel defeated, Colton has confronted each challenge with a smile on his face and a can-do attitude. After 23 surgeries – half of them by age 10 – along with thousands of hormone injections, and a very conspicuous halo brace he wore for three months, the worst appears to be behind him.

If all goes as planned, however, Colton will receive a college certificate as a Kitchen Steward in May 2020 that should be a ticket to a restaurant job performing his favorite activity -- cooking. Considering everything he has endured, that moment may instill a lump in the throat and endless joy in the hearts of so many who have been pulling for Colton.

Within minutes after he was born in June 1997, it was obvious that Colton had several physical abnormalities. Doctors immediately noticed a vertical cleft, or split, in the center of his upper lip and palate. These are rare conditions in which the upper lip does not form completely, and the roof of the mouth does not fully close. By themselves, the clefts would have been plenty to worry about, but they were just the beginning of Colton’s troubles.

“Colton had trouble breathing right away,” says his mother, Laura Maron. “An hour after he was born, he was taken by Med Flight from our hometown hospital in Beaver Dam to Madison.”

Colton spent his first month of life being cared for in the neonatal intensive care unit (NICU) at UnityPoint Health – Meriter in Madison. There, UW Health pediatric specialists in plastic surgery, endocrinology, ophthalmology and other disciplines would tend to him.

In addition to the cleft lip and palate, doctors soon identified two more serious physical defects.

First, Colton’s pituitary gland – located under the brain and behind the bridge of the nose – did not develop properly, resulting in a condition called panhypopituitarism. Because a normal pituitary gland (often called the body’s “master gland”) produces several hormones that regulate human growth, sexual development, metabolism, stress response and other essential functions, it is considered vital. Unable to produce these hormones himself, Colton began receiving them through injections and tablets – and has been doing so his whole life.

Second, Colton’s optic nerve, located in the back of the eye, was damaged. This condition, known as optic nerve hypoplasia, considerably impairs Colton’s vision by disrupting the connection between his eye and brain. He has no depth perception or peripheral vision. He also has trouble distinguishing between related colors and has some related visual processing deficits.

Not sure Colton would survive after birth

“When Colton was born, they did so many tests,” Laura recalls,” and we didn’t know if he would even survive. They actually did a scan to see if he literally had any brain matter.”

Despite all the difficult news, Laura and her husband, Brent, were encouraged that several other potential problems were ruled out. It was going to be tough, but fortunately, their son was going to live.

The Marons clearly needed good health insurance, so Laura returned to teaching in Waupun when Colton was six months old. Knowing that Colton would need full-time parental care, Brent quit work as an appliance technician and stayed home with Colton until he started kindergarten at age 6. Grandparents, friends and other family members pitched in constantly to help.

An endless string of surgeries

Most kids born with a cleft lip and palate require six to eight surgeries before the repair is complete – about one-third as many as Colton. His first operation, done at four months of age, closed the gap in his lip, allowing him to drink out of a bottle. The Marons would come to know every bump in the road between Beaver Dam and Madison, returning for countless hospitalizations and clinic visits at UW Health’s American Family Children’s Hospital.

From infancy through high school, Colton had surgeries to:

• Continue repairing his lip and palate

• Secure his eye after it looked like it was “floating”

• Put tubes in his ears (and replace them many times) to help drainage

• Fix a flap in the back of his throat

• Treat his sinuses to allow more nasal space

• Remove his tonsils and adenoids

• Remove nine teeth to make room for his permanent teeth

• Put a piece of bone from his hip into his jaw

• Straighten his nose

• Re-align his upper jaw one inch forward by breaking both jaws

UW Health pediatric plastic surgeon Delora Mount, MD, who performed all of Colton’s surgeries since he was 5, said the goal was to properly align his jaw to allow for normal biting and chewing.

“Colton’s case is one of the most challenging we have seen in my 18 years here,” says Dr. Mount. “Thankfully, his family has been there every step of the way to support him, and that is so crucial for achieving the best outcomes.”

Halo provided maximum jaw alignment

Because of his unusual jaw anatomy, Dr. Mount could only do so much through normal surgery. Knowing his bite still needed better alignment, she proposed that Colton wear a halo device that allows for more precise fine-tuning. At first, Colton did not feel ready to wear a metal device around his head.

By age 20, however, Colton was tired of people staring at his abnormal face. He was ready for the halo, and would undergo a complex, 6-hour surgery to have it installed.

In early 2018, Colton wore the halo 24/7 for three months. During that time, he consumed only liquids – mostly smoothies and soups. He slept in a recliner, using a horseshoe-shaped pillow to keep his head propped. When the halo finally came off, the news was everything he had dreamed.

For the first time ever, Colton could close his mouth and feel his lips and teeth come together in the right place. He could finally bite with his front teeth. Sleeping improved considerably, and his smile looked natural.

Pituitary Deficiency Presented More Challenges

Colton’s pituitary problem kept giving his caregivers more medical challenges.

“The pituitary gland actually develops from the tissue that also forms the roof of the mouth,” says UW Health pediatric endocrinologist David Allen, MD. “That’s why we are concerned about possible pituitary function problems with children are born with facial issues like Colton’s.”

Dr. Allen says children with a non-working pituitary gland must receive key hormone treatments without fail from their family or things could go downhill very quickly.

“It’s not like missing a dose of an over-the-counter pain reliever,” he says. 

Despite recently “graduating” from pediatric to adult care, Colton will always have a very special place in the hearts of the UW Health pediatric endocrinology team members.

“Colton is an incredibly warm and sensitive person who has developed into an impressive young man,” says Dr. Allen, “He has faced these challenges so resiliently with a loving, supportive family right beside him.

Jan Lehmann, RN, a retired pediatric endocrinology nurse, remembers Colton and his family very fondly.

“I was so thrilled when he invited me to his high school graduation party,” she says. “He is such a great kid who always came to the clinic with a smile on his face."

“Everything about Colton personifies bravery,” she says. “Think about having more than 20 surgeries and taking all of the hormone injections. And then going out in public with a halo in front of his face – that really took courage.”

It also takes courage to go scuba diving – a lifelong dream of Colton’s that had to wait because doctors were concerned about the pressure on his ears and his ability to breathe properly.

Finally, his medical team gave him permission to train. After training with his dad, Colton completed his performance dives and received his Open Water Diver certification on August 18, 2019.

“This truly means the world to Colton,” says Laura. “We are so proud of him!”