9-year-old DeAngelo “DJ” has his dreams for the future all planned out.
“DJ tells everyone that he wants to become a pediatric surgeon or a pediatric gastroenterologist one day,” explained Angela McCulloch.
“He says that he plans to go to school at the University of Washington and work at Seattle Children’s to help kids like they helped him.”
Angela is DJ’s mom, but also his biggest advocate.
DJ was born prematurely in Tacoma, Wash., at 31 weeks with a rare condition called esophageal atresia (EA), in which the esophagus does not form properly before birth, and tracheoesophageal fistula (TEF), an abnormal connection between the windpipe and esophagus.
A baby with EA cannot feed by mouth because there is no way for food and liquid to travel from their mouth to their stomach.
“We couldn’t feed him, and the doctor said he needed surgery quickly,” Angela recalled. “They recommended that we be transferred to Seattle Children’s Neonatal Intensive Care Unit (NICU), and within the 12 hours DJ was in Seattle having surgery that same night.”
About half of all children born with EA or TEF have other health problems.
The Airway and Esophageal Center team has extensive experience treating the most complex airway and swallowing conditions and brings experts from various specialties across Seattle Children’s together in one place.
“All the doctors came to one appointment and were working in there together,” Angela shared. “It was so amazing that they were all there just for DJ.”
“It is a hallmark of our care,” said Dr. Jake Dahl, a pediatric otolaryngologist at Seattle Children’s and a member of the Airway and Esophageal Center team. “This level of collaboration and coordination between clinicians is unlike anywhere else and makes the patient experience better.”
DJ’s case was quite complex and over the next several years required ongoing care in Seattle Children’s Pulmonary Program, ranked among the top 10 pediatric pulmonology programs in the nation by U.S. News & World Report, in addition to care from otolaryngology, gastroenterology, anesthesiology and nutrition teams, among others.
He also underwent multiple surgeries including a triple endoscopy.
“During that procedure, we identified a laryngeal cleft and a recurrence of TEF,” Dr. Dahl explained. “Before the surgery, DJ’s condition made it difficult for him to drink, limited his activity and gave him shortened breath. Now, he is doing great and is blossoming into a young man and his quality of life has improved.”
DJ is now a fourth-grade student who enjoys going to school, playing sports and exploring the outdoors.
“He is a very positive and resilient kid,” Angela said. “He’s able to be a kid and be free. DJ was able to join a flag football team and was an MVP. He also recently got a characteristic award from his teacher for inclusiveness. He genuinely cares about everyone.”
Though it’s an experience that she hopes others will never have to go through, Angela encourages other parents who do, to breathe, ask questions, find a support system, trust your motherly or fatherly instincts, and never be afraid to ask for help.
She is grateful for the care her family received at Seattle Children’s, which is consistently ranked among the top children’s hospitals in the country, and even keeps a scrapbook from each of DJ’s procedures with special notes by his care team, family and friends.
“At first, nine years ago, it was very overwhelming,” she said. “You see so many tubes, cords, and DJ was in a box. But everything was taken care of for us at Seattle Children’s. A social worker even helped me with a meal plan and financial aid assistance. It was a huge relief not having to worry about any of that. All I had to think about was my baby.”
Resources
- U.S. News & World Report Rankings (seattlechildrens.org)
- PE316 Tracheoesophageal Fistula and Esophageal Atresia (seattlechildrens.org)
- PE3334 Difficulty Swallowing (Dysphagia) (seattlechildrens.org)
- The Neonatal Intensive Care Unit (NICU) at Seattle Children’s (seattlechildrens.org)
- Airway and Esophageal Center – Seattle Children’s (seattlechildrens.org)
- Otolaryngology – Seattle Children’s (seattlechildrens.org)
- Pulmonary – Seattle Children’s (seattlechildrens.org)
- Anesthesiology – Seattle Children’s (seattlechildrens.org)
- Clinical Nutrition – Seattle Children’s (seattlechildrens.org)
