Posterior Glottic Stenosis: Surgery Gives Ethan a New Airway
"Out of all the hospitals I've been to, Cincinnati Children's is the best in the world."
Just hours after he was born, Ethan Cox was flown by emergency air care to Kosair Children's Hospital in Louisville, Kentucky. Ethan required a ventilator to help him breathe. Then at 2-1/2 months, he was given a tracheotomy. Ethan lived with his trach until he was 3 years old, where at Cincinnati Children's Hospital Medical Center he underwent laryngotracheal reconstruction to reconstruct his airway. Today, Ethan is a healthy 12-year-old who breathes normally.
When Ethan Cox was born, doctors at the hospital in Taylor County, Kentucky, knew something wasn't quite right. Ethan's head was misshapen, and some of his other features were small. Five hours after his midnight C-section delivery, a nurse became alarmed when Ethan began to choke and turn black. Emergency Aircare was called to rush Ethan to Kosair Children's Hospital in Louisville, Kentucky, where he was placed in intensive care. After a few days, doctors told Ethan's parents, Shirley and Tony Cox, that he would be at the hospital for two weeks. Those two weeks ended up turning into three and a half months.
Ethan was tested for a number of conditions during that time, without many results. At less than 2 weeks old, Ethan contracted a staph infection (a bacterial infection that can spread through the air, on contaminated surfaces, through open wounds, and from person to person), which caused all of his IVs to blow out. To help breathe, Ethan was intubated with a plastic tube put into in his windpipe, and he was placed on a ventilator.
Ethan Gets a Tracheotomy
As time progressed, doctors began to think Ethan's condition had something to do with his pituitary gland, and believed an MRI scan of the brain would lead them to a diagnosis of, and ultimate treatment for, his condition. But because he was on a ventilator, Ethan could not receive an MRI. He had to be off the ventilator and have it replaced with a tracheotomy before he could get the MRI scan. A tracheotomy is a surgical procedure where a hole is cut into a child's airway in order to help the child breath.
For two and a half months, doctors at Kosair did everything they could to take Ethan off the ventilator. It wasn't easy, but eventually Ethan was able to get an MRI. After fifteen and a half weeks, Ethan was diagnosed with panhypopituitarism, a condition where the body does not produce any hormones. After all this time, Ethan finally began treatment—and started his road toward Cincinnati Children's.
A Trip to Cincinnati Children's
Two years after Ethan received his trach, Shirley and the health care team at Kosair felt it was time for Ethan to breathe normally. But reaching that milestone would be incredibly difficult. Every attempt to remove the trach failed, and Ethan came close to death once in the process. Eventually, Shirley was told that her little boy would have his trach for the rest of his life.
This put Shirley into action. "Call me a mother in denial," she said, "but I just didn't believe it. I knew Ethan was not going to have his trach for the rest of his life." She got online and began an extensive research process.
Through a referral from an ENT physician in Massachusetts where Shirley's mother was working at the time, she was given the name of Robin Cotton, MD, in the Division of Otolaryngology / Head and Neck Surgery at Cincinnati Children's. Dr. Cotton is a world renowned pediatric surgeon who is a leader in the diagnosis and treatment of airway abnormalities. Shirley called Cincinnati Children's right away. Dr. Cotton called her back, and after listening to Ethan's story he said, "You need to come see us."
Breathing Easy
Shortly after talking with Dr. Cotton, the family made the trip to Cincinnati Children's that would change their lives. Ethan was diagnosed with posterior glottic stenosis, a condition where the larynx (the area of the throat where the vocal cords are located) is scarred or narrowed. In Ethan's case, the scar tissue in his airway was caused by the intubation at infancy.
At 3 years old, Ethan underwent laryngotracheal reconstruction, a surgery to reconstruct the airway. While the surgery was important for the Coxes, it marked an historical event for Cincinnati Children's as well. Ethan was the 1,000th patient to receive an airway reconstruction at Cincinnati Children's, which today has performed almost 2,000 such procedures.
After an extensive three-phase process, Ethan was finally able to have his tracheotomy removed. Shirley remembers feeling they had found the answer at Cincinnati Children's. "The people there really embraced us," she said. "I prayed for the doctors and nurses, saying, 'God will guide your hands.' I remember anesthesiologist Eric Wittkugel, MD, thanked us for praying for him."
"Cincinnati Children's can fix kids."
In July 2006, after several follow-ups to monitor Ethan's airway and growth, the ENT team at Cincinnati Children's decided that additional appointments were no longer necessary. Ethan's airway was now as big as an adult's and he was growing just fine.
Shirley feels the health care team at Cincinnati Children's became like a second family. "Today," she said, "I tell everyone Cincinnati Children's can fix kids. I even went back and told Ethan's pediatric surgeon in Louisville about the airway team at Cincinnati Children's."
Although Ethan's first three years of life were very stressful, they allowed Shirley and Tony to become the best possible health care advocates. This was again proven true when Ethan's sister Jewell was born with a rare condition called arthrogryposis. Her condition limits her mobility due to joint contractures and muscle weakness. "It is challenging, but my kids are happy and we have a great support system," said Shirley.
Today, Ethan is an active and thriving 12-year-old. He loves his uncle's boat, animals, school and Cincinnati Children's. More importantly, he is breathing easy. He said, "Out of all the hospitals I've been to, Cincinnati Children's is the best in the world."
The Cox family lives in Elkhorn, KY, where Shirley is a busy mom to Ethan and 4-year-old daughter Jewell. Shirley is an elementary school teacher and her husband Tony is a truck driver.
