April 16 was a life-changing day for 5-year-old Michael Kostecki. The tracheostomy tube that he had for almost his entire life was finally removed.
In 2013, Michael was born prematurely at 26 weeks old. He weighed a mere 1 pound 12 ounces and spent five months in the Neonatal Intensive Care Unit (NICU) at Brigham and Women’s Hospital. When his mom, Kerri Kostecki, finally brought him home, Michael weighed 4 pounds.
“Pretty much any complication he could have in the NICU, he had,” says Kerri. “Unfortunately, that continued after he went home.” Because he was born prematurely, his lungs were severely underdeveloped, he struggled with pulmonary hypertension – which caused his heart to work overtime and didn’t allow enough oxygen flow to his body – and because of his small chin size, he was difficult to intubate. The decision was made, at 9 months old, to insert a tracheostomy so that he could be put on a ventilator and oxygen support.
Michael spent the first few years of his life dependent on his mother’s care and the help of a 24/7 in-homenursing service. “He was still in all other aspects a perfectly normal little boy,” Kerri says. A little boy who continued to grow, to smile and to take all life threw at him in stride.
In 2017, Kerri thought Michael had developed enough to no longer need the tracheostomy, and she turned to doctors Christopher Hartnick, MD, chief of the Division of Pediatric Otolaryngology at MassGeneral Hospital for Children (MGHfC), and Zack Peacock, MD, DMD, of Pediatric Oral and Maxillofacial Surgery, who performed two surgical procedures on Michael’s jaw and temporomandibular joint.
“Those surgeries opened his mouth and it was like night and day,” Kerri says. “We had never seen his tongue before that.”
With Michael’s jaw issues resolved – which also remedied his sleep apnea – Michael was cleared in the fall of 2018 to have his tracheostomy removed after cold and flu season ended.
“What was really helpful at MGH was the constant communication between the doctors,” says Kerri. “He wasn’t just seen as separate problems, but as a whole patient and person. The Pediatric Coordinated Care Clinic was so great at steering us in the right direction.”
A world of possibility and independence is now open to Michael, who announces “Look no trach!” to everyone he encounters, while pointing to his tube-free throat. Before his procedures at MGHfC, Michael was dependent on a gastrostomy tube for nutrition and had very limited speech. He now is able to eat on his own and is making great strides with speech therapy thanks to improved jaw mobility and tracheostomy removal.
Michael also can sleep in his own bedroom for the very first time, which, until now, was not big enough for all his necessary medical equipment.
“The trach saved his life, there’s no arguing that,” Kerri says. “But this summer, for the first time in his life, he’ll be able to swim underwater, and will enter kindergarten this fall – on his own. Without the trach and a nurse trailing after him. And nothing can beat that.”
Read more articles from the 06/14/19 Hotline issue.