A family trip with bronchopulmonary dysplasia

A smiling child has a tracheostomy tube and is sitting on a woman's lap.
Xavien was born at 26 weeks and spent the first seven months of his life in the NICU battling bronchopulmonary dysplasia (BPD), a chronic lung disease often seen in premature newborns.

Xavien Velazquez is getting ready to celebrate his first birthday. It is a milestone for every child but especially meaningful for this young child who has spent more than half of his life away from home receiving care. Bronchopulmonary dysplasia (BPD), a chronic lung disease characterized by respiratory distress often seen in newborns who are born premature and have underdeveloped lungs. Thanks for the difference in divisions neonatology And the pulmonology At Boston Children’s Hospital, Xavien is home, happy, and thriving in time for his big day.

Draw a route after early access

Xavien arrived unexpectedly at 26 weeks of age and spent the next two months in the neonatal intensive care unit (NICU) at the maternity hospital. His parents, Evelyn and Cersei, were by his side every minute of those long days and were dedicated to bringing him home.

“From the moment he was born, he was intubated,” Evelyn remembers seeing Xavien put a tube endotracheal into his airway. The tube was connected to a ventilator that mechanically brought oxygen into Xavien’s lungs to help him breathe. But even with ventilator support, Xavien’s heart rate and oxygen levels drop so much, he sometimes needs CPR to recover. After repeated accidents, Evelyn and Cersei knew their son needed more help. The day finally came when they had had enough.

“He had an episode where he totally left us,” Cersei says. “All of his levels have reached zero for some time.” After Xavien settled in, 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

The move from western Massachusetts saw Xavien and his parents arrive at Boston Children’s in the middle of the night. Despite the time, the Newborn Medicine team went straight to work and within hours determined that BPD was complicated by Xavien. tracheomalaciaCollapse of the large airways.

“Tronochomalacia could be a complication of chronic ventilation support like Xavien experienced,” he says Dr.. Jonathan Levine, a physician in pulmonology and neonatology who helps oversee Xavien’s care. “Once the tracheitis was identified, we were able to adjust the ventilator settings to prevent him from having these frightening attacks.” The pulmonology team also determined that Xavien was a candidate trachea To open a collapsed airway. Tracheostomy is a surgical procedure that opens and supports the trachea by securing part of it to the spine.

Evelyn and Cersei were thrilled and relieved to get answers soon after they arrived at Boston Children’s Hospital. But Xavien’s surgery wouldn’t be quick: He would need to reach full gestation (40 weeks) before he could undergo tracheostomy and was still a month and a half past his due date.

“The team told us we’d be staying with them for a while,” Cersei says.

A customized long-term approach

What happened over the next few months was a delicate balance between neonatology and breathing support, including a tracheostomy that freed Xavien’s mouth and face and allowed him to develop his oral motor skills, participate in physical and occupational therapy, and interact more with his parents.

In January – five months after his birth and two months after his due date – Xavien underwent a tracheostomy. The operation succeeded in opening the airway, and his robust recovery means the pulmonology team can begin to dramatically wean the ventilator settings, with the long-term goal of weaning him off ventilation completely.

There is no place like home

In March, Evelyn and Cersei brought Xavien home for the first time.

Usually, children are taken to a rehab hospital after their tracheostomy procedure, but Xavien’s team was impressed with his recovery and progress and felt that Evelyn and Cersei were equipped to manage his care at home. Their willingness was due in large part to their unwavering commitment to being at Xavien’s side and participating in his care.

“We were allowed to do so much of his care while we were in Boston that almost everything he needed to do was already done,” Searcy says. “Not a lot of the things we do for him at home are new to us.”

At home, Evelyn and Cersei are supported through telehealth and home visits from the Xavien care team and through training they received through Chronic Pulmonary Respiratory Program.

Today – just weeks after his first birthday – Xavien is enjoying fiddle, music and story time, lighting up the room with his smile.

“He’s the happiest kid,” says Evelyn. “He’s a social butterfly,” Cersei adds.

Discover the Department of Neonatology at Boston Children’s.