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patient story

Christofer Maddox

coming full circle

Queenie Maddox sits proud as a peacock in the pediatric intensive care unit at Dayton Children’s. For her, today is a very special day. A day that signifies a bright future and a story that has come full circle.

Each day an average person takes approximately 23,000 breaths, and most of us probably take these breaths for granted. But on this day, Queenie’s son Christofer is savoring every breath he takes. 

At age 23, July 19, 2017 was the very first day since day three of Christofer’s life that he has breathed without the assistance of a trach attached to his neck.

Christofer was born with a complete lack of nasal passages, a rare condition called congenital arhinia.

“We never knew anything was wrong during my pregnancy,” shares Queenie. “He always had his hands in front of his face and all of the genetic testing came back normal.”

Today, arhinia is still a very rare disorder, with less than 50 reported cases worldwide. However, at the time of Christofer’s birth, there was only one other documented case, and it was in Africa. Christofer’s case has helped pave the way for other children born with this condition.

At 3 days old, Christofer was brought to Dayton Children’s from the birth hospital and underwent a tracheotomy, a tube placed by a pediatric surgeon so that he could breathe.

Christofer and Queenie then began down a track of multiple plastic surgeries done by local Dayton plastic surgeons who partnered with Christofer’s pediatrician and pulmonary medicine team from Dayton Children’s to ensure he was getting the best care possible as they worked to rebuild his nasal passages.

Growing up without a nose certainly can make other kids and adults have questions. When Christofer was 6 years old he was even a guest on the Maury show with other kids with medical abnormalities to discuss his condition.

But for Christofer, it was just part of his norm. He didn’t know anything different. As life continued on as normal, Christofer continued to have surgeries tallying up to over 20 surgeries to date.

In 2005, Christofer’s life changed when he and his mom found their way to the office of plastic surgeon Steven Schmidt, MD, a member of Dayton Children’s cleft palate clinic.

“Queenie looked at me and said ‘Look. I know you’ve never done this before. Nobody has. But I need someone who is going to be bold.,” said Dr. Schmidt. “I looked back at her and said ‘Great! I’m your guy.’”

Dr. Schmidt’s first task was to find a way to give Christofer a cosmetic enhancement that would look somewhat like a nose. Up until this point, Christofer’s face was concave.

Using a 3D sculpture of Christofer’s skull as his guide, Dr. Schmidt was able to build a nose out of orthopaedic bone cement. He then surgically placed this structure underneath Christofer’s skin. For the first time in his life, Christofer’s face began to include a nose like shape. Dr. Schmidt completed this surgery two more times over the years, each time increasing the size of the sculpture to slowly stretch the skin. However, while these surgeries gave the look of nose they still weren’t providing him with a functioning airway.

But in the summer of 2016, that all changed as Christofer underwent his most complex surgery to date.

“They had to break my jaw and drill through solid bone to get the airway flowing” says Christofer.  

Dr. Schmidt worked with two other specialists from Dayton Children’s, Salim Mancho, MD, plastic surgeon, and Terrance Allemang, DDS, oral surgeon as well as three resident physicians for six hours as they built a space for Christofer to breathe. This included completing a skin graft internally from the tip of the nostrils all the way to the back of the throat to line where they drilled the holes for Christofer’s nasal passages.  

“This was an extremely complex and intense surgery,” shares Dr. Schmidt. “No one had ever done a surgery like this before so we didn’t have textbooks or articles to refer to. A wrong movement in any direction could be detrimental for Christofer. It was imperative that we got this right.”

When the surgery went as planned, everyone breathed a sigh of relief… and Christofer began, although still with the assistance of the trach, to learn how to breathe through his newly created nostrils.

“It took two months to recover from that surgery,” remembers Christofer. “I couldn’t eat anything that I was required to chew. I lost 32 lbs!”

Slowly but surely, Christofer regained his strength. A few months later he had another surgery in which the doctors used cartilage and bone from his ribs and ears to strengthen the nose structure so it wouldn’t collapse.  

After a successful adenoid scope and airway evaluation by Ravi Elluru, MD, Dayton Children’s ear, nose and throat physician, as well as a successful sleep apnea test, Christofer was cleared to have his trach removed.

“The condition that Christofer has is extremely rare, especially the type he had,” shares Dr. Elluru. “Christofer is quite the inspiration. He has incredible strength and poise. This kid is one in a million in many ways.”

“Many of the kids that do have this condition have many other conditions including learning disabilities, but not Christofer. He really is a very bright kid,” says Dr. Schmidt. “Working with him for 12 years has truly been the case of my career.”

For Christofer, hours after the surgery he says “it’s weird to not have a trach in.” But it is said with a huge smile across his face as he considers the possibilities for what his life will look like trach free.

Christofer has big dreams of becoming a sports agent and hopes to move to Denver someday soon to start pursuing those dreams.

Christofer’s story has come full circle. 23 years ago Queenie took her baby boy home from Dayton Children’s to begin his life, not knowing exactly what the future would hold. But today, as she once again takes her son home from Dayton Children’s, she is filled with hope of a new beginning for the man she is so proud to call her son.