Sean's Story

Sean's Story

 

His best chances were at PCH


Sean’s story begins when he was born in Albuquerque, New Mexico, in August of 2004, twelve weeks premature.

At a mere 2 pounds, 13 ounces, Sean suffered from major heart, lung, and intestinal abnormalities. Specifically, he was born with tracheoesophageal fistula, which meant his esophagus separated in the middle, and the bottom part attached itself to his trachea (the airway through which we breathe). Sean’s stomach attached to his lungs, which were already compromised by his prematurity. An artery and a valve in his heart were not fully developed, and there was a hole in one of the heart walls.

In Albuquerque, Sean had to undergo esophagus, lung, and two heart surgeries. His chances of survival were questionable.

Sean needed additional specialized surgeries, leaving his parents to make one of the most important decisions in their lives. Where would Sean receive the best care? If it was out-of-state, would Sean’s mom have to leave her job of 12 years and could Sean’s dad work remotely? How would Ryan, their older son, adjust if they moved? In the end, these concerns were secondary to Sean’s health. After careful consideration, the family’s first choice was Phoenix Children’s Hospital.

"We’ve researched quite a few hospitals and I don’t think they can match the level of care and knowledge or the number of specialists that Phoenix Children’s Hospital has. Their expertise is just amazing."  –Chris, Sean’s dad

That November, the family made a life-changing move. At three months old and only three pounds, Sean was flown by an air-evac medical team to PCH. While Chris began a new life in Arizona, Mary Ann wasn’t able to quit her job immediately. So she flew back and forth between the hospital and Albuquerque until March of 2005. The Hospital’s family-centered care was immediately evident when they helped her secure a free rental car for as long as needed.

A team that is second to none

"I couldn’t ask for a better team of doctors." –Mary Ann

Sean had a total of eight surgeries at PCH. During the process, there were many hurdles. For example, he developed a stricture (narrowing) of the esophagus, making it very hard for Sean to drink or eat. So he needed a tube that slowly fed nutrients directly into his stomach.

The gastrointestinal team performed additional procedures on Sean to help open up the esophagus and reduce scarring.

Sean had some very unusual and difficult issues, and Stewart Lacey, MD, Sean’s surgeon, had to figure out ways around them.

"Dr. Lacey is extremely personable, a real family guy, and was very thorough in how he explained Sean’s stomach and esophagus surgeries." –Chris

Michael Teadori, MD, Sean’s heart surgeon, has what Mary Ann calls the “wow factor.” He performed an open-heart surgery on Sean.

"He’s really an artist with what he can do with the heart." –Chris

Dr. Teadori won the respect of both parents not only for his surgical skill, but because he was always straightforward with his explanations and at the same time kind and patient.

 


Sean’s family of nurses

"The nurses give you a real sense of security when you go home to sleep for the night. You know your child is going be taken care of, just like they would if you were there." – Chris

Between surgeries, Sean spent almost a year on his back in the Hospital’s Newborn Intensive Care Unit (NICU). Sean’s family found the nurses to be exceptionally thorough.

Work was more than work for these nurses; it was caring for the sickest little kids. And the nurses went the extra mile to do whatever it took to help Sean.

"Sean was such a sick little boy when he got here, yet his courage showed through despite everything he endured." – Penny Overgaard, Trach and Airway Team member

Nurse Pam Russman would often read books and play with Sean, watching his delightful personality develop. The family appreciated these times immensely because it’s what they would have done with Sean if he were home.

The doctors and nurses also paid close attention to the emotional needs of the parents, knowing that at many points Sean was teetering between life and death. They would listen to Chris’ concerns, hug Mary Ann when she would cry, and ease their minds whenever possible. This level of sensitivity was very comforting and helped reduce stress during daily visits.

One of the night nurses, Lisa Baker, still sees Sean today at his home.

"She’s a wonderful lady. She’s like part of the family." –Mary Ann


The energetic little guy today

After three heart surgeries, six gastrointestinal surgeries, a lower-left lung removal, a spleen removal and numerous catheter procedures, Sean was released from the hospital. He came home with a tracheotomy and a ventilator to help him breathe.

The Trach & Airway Team worked in tandem with Cardiology and Pulmonology to give state-of-the-art care that was nearly seamless from hospital to home. Physicians, nurses, case management, nutrition, respiratory care, and social workers all came together during this transition.

One of Sean’s main remaining issues is getting his esophagus to stay open on its own. Due to narrowing caused by scarring, Sean is currently seeing Dana Ursea, MD, his Gastroenterologist. She performs outpatient procedures that use a balloon to open his esophagus.

"Sean has one of the most severe cases of tracheoesophageal fistula due to the complexity of all his medical issues." –Dr. Dana Ursea, Gastroenterologist

However, Dr. Ursea is scheduled to speak with physicians in England who are using a new treatment to help reduce the scarring. Once she finds out its success rate, she may suggest it for Sean. This innovative method is part of the efforts to avoid another major surgery.

Currently, Sean has follow-up visits with Michael Graziano, MD, his cardiologist; James Woodward, MD, his pulmonologist; and Dr. Ursea.

"They are all exceptional specialists. They play and laugh with Sean. It’s not like they just say ‘Hi’ and that’s all. It’s really neat to watch them interact." –Mary Ann

Sean’s medical team always had a plan – whether it was the next surgery or next stage of care. This focus brought Sean’s family closer than ever.

And he’s getting better every day. Although he still uses a ventilator, Sean is happy, bouncy, and full of life. He loves it when his brother reads books to him and he’ll literally hug his parents for five minutes without letting go. Now the plan is for Sean to revel in being a toddler, with another chance to grow into the little boy his family always hoped he’d become.

More PCH Kids' Stories

Share this page: 

|