Mikey Catapano, 2, bounced and babbled his way around the O’Keeffe Auditorium at Massachusetts General Hospital in suspenders and button-down shirt. A blue bowtie completed his dapper ensemble. Mikey’s bowtie, however, is a dramatic difference from the tracheotomy tube he had removed less than a year ago.

 

At 3 months old, Mikey was diagnosed with laryngomalacia, or floppy vocal cords. This made it hard for him to breathe. It also meant that he might need surgery and a tracheotomy while his vocal cords continued to develop. On April 11, his parents, Katie and Michael, of Beverly, Mass., shared their family’s experience at this year’s Grand Rounds, sponsored by the Family Advisory Council at MassGeneral Hospital for Children (MGHfC). Every April, the FAC sponsors a Grand Rounds session to highlight the importance of family-centered care and communication to the MGHfC community.

From birth, Mikey had stridor, or raspy breathing. His pediatrician thought it was reflux. After a few tests, he was diagnosed with laryngomalacia. At 2 ½ months, Mikey continued to struggle to breathe. He was referred to Pediatric Otolaryngology (ENT) at MGHfC and the Massachusetts Eye and Ear Infirmary (MEEI).

“We thought our appointment would be quick and that we might even get a date day out of it with a nice dinner,” said Katie. That wasn’t the case. That night, Mikey was admitted to the Pediatric Intensive Care Unit (PICU) for observation.

 

During Mikey’s two-week hospital stay, Christopher Hartnick, MD, chief of Pediatric ENT at MGHfC/MEEI, performed two surgeries to trim back the excess tissue around his vocal cords. The surgeries helped, but did not solve the problem. Hartnick’s next recommendation was for Mikey to have a tracheotomy, or trach, to help him breathe. The Catapanos were hesitant, but ultimately decided it was the safest and best option for their son.

The decision about a trach required open, honest communication from every member of Mikey’s care team. With Hartnick and Kevin Callans, RN, Mikey’s case manager at MEEI, modeling good communication, the Catapanos felt comforted, involved and reassured throughout their son’s hospital stay. Other integral members of the care team included Josephine Lok, MD, a physician in the PICU, and Erin Simonds, RN, a nurse in the PICU.

“We are a family-centered hospital, which means the family is involved every step of the way,” said Hartnick. “When recommending to parents that their child needs a trach, it helps to be a parent yourself. It is an enormous shock. We try to help families through that shock and become a support system because ultimately, the trach is what’s going to give their child a safe airway and a better quality of life.”

Before Mikey was admitted, the Catapanos believed trachs were for people at the end of their lives. Mikey had his trach for just over a year before having it removed in May 2016. Without it, he would not be the bubbly, babbling toddler he is today.

“After waking up from anesthesia after Dr. Hartnick put the trach in, it was like Mikey was a totally different baby,” said Katie. “He had a huge smile, whereas before, he always had this look of consternation because he was struggling to breathe. He was overcompensating to breathe until he couldn’t compensate anymore. It’s like the trach let him be the baby he was meant to be.”

The FAC at MGHfC comprises family members, hospital leaders and patient-care staff who work together to promote family-centered care, focus on improved quality and patient satisfaction. If you know of a parent, patient over the age of 16 or family member interested in joining the FAC, please email FAC@partners.org.