Xavien Velazquez gets ready to celebrate his first birthday. It’s a milestone for any child, but especially meaningful for this little boy who has spent more than half his life outdoors and receiving care for bronchopulmonary dysplasia (BPD), a chronic lung disease characterized by respiratory distress that is most commonly seen. in newborns who have preterm and underdeveloped lungs. Thanks to the teams from the Newborn Medicine and Pulmonary Medicine departments at Boston Children’s Hospital, Xavien is home happy and on time for his big day.
Setting the course after an early arrival
Xavien arrived unexpectedly at 26 weeks and spent the next two months in the neonatal intensive care unit (NICU) at his birth hospital. His parents, Evelyn and Sersy, were by his side every minute of those long days and committed to bringing him home.
“From the moment he was born, he was intubated,” Evelyn recalls seeing Xavien place an endotracheal tube in his airway. The tube was connected to a ventilator that mechanically delivered oxygen to Xavien’s lungs to help him breathe. But even with the ventilator support, Xavien’s heart rate and oxygen levels often dropped and he sometimes had to perform CPR to recover. After repeated incidents, Evelyn and Sersy knew their son needed more help. Finally the day came when they had had enough.
“He had an episode where he left us completely,” Sersy says. “All of his levels hit a bit of zero.” After Xavien stabilized, the NICU team and his parents agreed that he should move to Boston Children’s, where he could receive the highly specialized care he needed.
Time-defying care
During the transfer process from western Massachusetts, Xavien and his parents arrived at Boston Children’s in the middle of the night. Despite the time, the Newborn Medicine team got to work right away and determined within hours that Xavien’s BPD was complicated by tracheomalacia, a collapse of the large airways.
“Tracheomalacia can be a complication of chronic ventilator support as Xavien had experienced,” said Dr. Jonathan Levin, a physician of pulmonary and newborn medicine who oversees Xavien’s care. “Once we identified tracheomalacia, we were able to adjust his ventilation settings to prevent him from having these scary episodes.” The pulmonology team also determined that Xavien was a candidate for tracheopexy to open his collapsing airway. Tracheopexy is a surgical procedure that opens and supports the trachea by attaching part of it to the spine.
Evelyn and Sersy were excited and relieved to receive answers so soon after arriving at Boston Children’s. But Xavien wouldn’t be so quick to operate: he would have to reach full gestational age (40 weeks) before undergoing the tracheopexy, and he was still a month and a half from his due date.
“The team told us we would be with them for a while,” Sersy says.
A tailor-made long-term approach
What happened over the next few months was a careful balance of newborn medications and respiratory support, including a tracheostomy that cleared Xavien’s mouth and face and allowed him to develop his oral motor skills, participate in physical and occupational therapy, and more. to communicate with his parents.
In January – five months after his birth and two months after his due date – Xavien had his tracheopexy. The procedure successfully opened up his airways, and his strong recovery meant that the pulmonary medicine team was able to wean his ventilator settings significantly, with the long-term goal of completely weaning him off the ventilator.
No place like home
In March, Evelyn and Sersy first brought Xavien home.
Babies are normally discharged to a rehabilitation hospital after tracheopexy, but Xavien’s team was impressed with his recovery and progress and felt that Evelyn and Sersy were equipped to manage his care at home. Their willingness was largely due to their steadfast commitment to stand by Xavien’s side and participate in his care.
“We got to do so much of his care while in Boston that almost anything he needed we already did,” Sersy says. “Not a lot of the things we do for him at home are new to us.”
At home, Evelyn and Sersy are supported by telecare and home visits from Xavien’s care team and by the training they have received through the Chronic Pulmonary and Ventilator Program.
Today – just weeks away from his first birthday – Xavien loves games, music and stories, and he lights up the room with his smile.
“He’s just the happiest kid,” Evelyn says. Sersy adds, “He’s a social butterfly.”
Discover the Newborn Medicine Department at Boston Children’s.