A constant smile through all challenges
Imagine being a 200-pound adult trying to survive with a 50-pound ball, about half the size of your head, growing from your mouth like a giant piece of inflated bubble gum. That’s how Tracy and Chris Schinzel try to provide perspective that adequately describes the challenge their son Jude confronted when he was born at 31 weeks of gestation on Dec. 28, 2011 at the Elizabeth J. Ferrell Fetal Health Center at Children’s Mercy.
Ten weeks before his birth, the Schinzels learned that Jude had a large oral teratoma (tumor) attached to the roof of his mouth. Because of the location of the tumor, Jude needed a tracheotomy to help him breathe immediately after his delivery. Jude weighed four pounds, and his tumor was more than a half-pound. “It weighed about as much as a Coke can and was over half the size of his head,” Tracy said.
Because of concerns that Jude might not be able to breathe when he was born, the decision was made to deliver him by an EXIT (Ex Utero Intrapartum Treatment) Procedure. This procedure, which is risky for both mother and baby, allowed for Jude to continue to receive oxygen from his mother's placenta while an airway was placed. Once he was stabilized, the delivery was completed. This process is extremely complex, requiring planning and simulation by all of the professionals involved, including obstetrics, neonatology, anesthesia (for both mother and baby), and surgical subspecialists.
A team effort
After Jude was born, the airway was further secured through tracheotomy in the delivery room. Subsequently, he underwent surgery to remove the tumor at about a month of age. Robert Weatherly, MD, Ear, Nose and Throat Chief, and plastic surgeon Shao Jiang, MD, Director of the Cleft Lip/Palate Center, performed the surgery and Shannon O’Shea of Hanger RDA at Children’s Mercy crafted a custom-designed brace. Because of their work, Jude’s jaw has grown at the proper angle despite problems caused by the tumor.
“The postoperative mandibular molding orthotic made for Jude was a really new innovation that had only been described in literature for three other patients,” said Dr. Jiang, adding that the molding orthotic contributed significantly to improving Jude’s appearance and oral function, and negated additional jaw surgery that Jude otherwise would have had to endure.
The road to recovery
Jude spent 111 days in the Children’s Mercy Neonatal Intensive Care Unit (NICU) before going home on a ventilator, oxygen, and a gastric feeding tube (g tube).
Today, one-year-old Jude smiles constantly and loves people. He is currently weaning off his ventilator and continuing to reach developmental milestones.
“The staff took special care of Jude,” Tracy said. “I felt like he wasn’t just our child, he was everybody’s. His case was very complicated, but they all did a great job of communicating and talking things through with us.”