Yanet Casillas walked into a prenatal checkup at 20 weeks pregnant ready to learn the sex of her baby, which she did. It was going to be a boy. What she wasn’t ready for was the news that her son was in distress. His bottom was already in the birth canal, which concerned the doctors that were giving her obstetric care—so they put her on bed rest for a month and ultimately decided to induce an early labor. Yanet’s son, Mathias, was born at 24 weeks, early enough to be considered a micro preemie.
Because he was born very early, Mathias’s lungs hadn’t fully developed, so the doctors in the Neonatal Intensive Care Unit (NICU) at the hospital where he was delivered put him on a ventilator. That helped him breathe, but at the same time, the intervention agitated his tiny body, contributing to his development of bronchopulmonary dysplasia (BPD), a rare lung disease most often found in babies born before 32 weeks. And Mathias faced the added complication of pulmonary hypertension, a form of high blood pressure that affects arteries in both the lungs and the heart and happens to 25% – 40% of babies with severe BPD.
As the state of Mathias’s lungs and heart worsened, he faced a greater risk of other health issues; cardiorespiratory distress in babies can lead to difficulty with growth and nutrition, for instance. And it was hard for doctors to treat Mathias, given how serious some of his issues were. Weeks turned into months and Mathias still struggled. Yanet and her husband were becoming more and more anxious.
“It was scary for both of us. It still is,” Yanet said.
In order for Mathias to survive, he needed a bigger team of experts. So after four months in the NICU, he was transferred to the pediatric intensive care unit (PICU) at Stanford Children’s Health to continue his journey. There, he received care from a multidisciplinary group of doctors from the hospital’s Cardiac and Respiratory Care for Infants with BPD program, or CRIB for short. That included a pulmonologist who monitored his lungs; a cardiologist who kept a close eye on his heart and blood pressure; and a neonatologist who specializes in newborn intensive care and neurodevelopment of sick newborns. Together, the team created a comprehensive, personalized plan to save Mathias’s life.
It takes a village
Multidisciplinary care, which brings together doctors from different areas of focus, is a standard practice at Stanford Children’s Health. And a few years ago, pediatric cardiologist Dr. Rachel Hopper recognized how much that approach would be helpful while treating BPD, since the illness affects multiple body functions, including the heart, vascular system and lungs.
With support from the hospital, she formed the CRIB program in 2018 alongside pediatric pulmonologist Dr. Michael Tracy and neonatologist Dr. Shazia Bhombal. By establishing the program, they set an example for how other health care organizations can better treat BPD.
“Certainly there are other hospitals that have BPD follow-up programs, but the true multidisciplinary approach at Stanford Children’s Health is something that we’re proud of,” Hopper said.
Mathias was one of CRIB’s first patients; the team began treating him while he was still in critical condition in the PICU. There, Bhombal followed his progress to ensure newborn-specific issues were attended to and that his development was on the right track; Mathias had retinopathy of prematurity, for instance, an eye disorder commonly found in babies born before 31 weeks. She tracked the progress of his vision while ensuring that he met other milestones, as well.
“Because Mathias had a breathing tube in for a long time, which limited his mobility, our developmental team, occupational and physical therapists were involved, providing regular assessments and creating care plans to optimize his development.” Bhombal said.
The PICU is also where Tracy made decisions about how to get Mathias safely supported by a ventilator, an essential step in saving his life. Tracy chose not to continue using the breathing tube through Mathias’s mouth because of the risks associated with that approach. Instead, he opted for a tracheostomy, a procedure in which an ear, nose and throat (ENT) specialist adds a tube directly to the trachea. This would give Mathias access to a new airway and support his lungs while relieving pressure on his heart.
“[When a patient receives a] tracheostomy, they can start to meet developmental goals and ultimately leave the hospital on a home ventilator,” Tracy said. Dr. Doug Sidell, an ENT doctor at Stanford Children’s Health, stepped in to complete the procedure and help Tracy get Mathias one step closer to healing.
And then there was the matter of Mathias’s heart. To further manage his pulmonary hypertension, Hopper put him on medication to stabilize him and prevent heart failure. She also grappled with how to treat Mathias’s patent ductus arteriosus (PDA), a persistent opening between two major blood vessels. On the one hand, surgically closing the connection would resolve it for good. On the other hand, there was a chance Mathias’s PDA was relieving some of his pulmonary hypertension, and the surgery required to close it would be risky for him, since he’d already been through so much—and was still very young and vulnerable.
“Premature babies are so small and fragile. The interaction between the heart and lungs can be complicated, so we consider all treatments carefully,” Hopper said.
After Mathias’s lungs stabilized, his cardiac condition improved as well, meaning there wasn’t an imminent need to close the PDA—which had gotten fairly small. So Hopper decided against the procedure. She continues to keep an eye on it, and she still may close it in the spring, after some time has passed. But for the time being, she and her colleagues are reassured by the fact that Mathias’s health is improving.
Yanet is relieved, too, and she’s grateful that she brought Mathias to Stanford Children’s Health. Without their multidisciplinary approach, he wouldn’t have received the layered treatments that he did in such a short period of time. She’s also grateful for her own positive experiences in the hospital, and the support that she and her husband received during such a challenging time.
“It was really awesome to see how everybody worked together with us,” Yanet said. “The medical staff [was] open to us, [answering] questions over and over until we understood what the process was going to be. We felt so loved, like we could approach everyone.”
Learning to breathe
Today, Mathias is three years old and has a mellow, easy-going temperament. He loves to sing and dance, especially for his doctors, who never fail to reward him with applause.
He’s been slowly weaned off the ventilator by Tracy and he recently completed a “cap trial,” in which Sidell put a cap over the tracheostomy to see how Mathias could tolerate it. He’s done well at home with the cap, and Yanet hopes the progress will continue, so he can start preschool in the spring without a tracheostomy.
The rest of the CRIB and ENT teams continue to follow his progress and plan to do so at least through elementary school age—which is a boon for the medical staff, who loves to see him every chance they get. When Mathias recently went in for his cap trial, “so many nurses that hadn’t seen [him] in two years showed up to say ‘hi,’” Yanet said. “It was really heartwarming.”
Mathias’s medical team is beyond thrilled that Mathias is thriving. After all, patients like him are the very reason they created CRIB.
“It’s really rewarding to see [that Mathias is] doing well, when early on we were so worried whether or not he would even survive,” Hopper added.
Stanford Children’s Health, for their part, continues to grow and expand CRIB, bolstering research efforts toward further improving care for patients with BPD. The multidisciplinary foundation of CRIB will support both scientific and clinical research programs aimed at discovering patient-specific treatments and cures for BPD in the future. The team is also part of the Pediatric Pulmonary Hypertension Network, a collection of children’s hospitals with pulmonary hypertension programs, and a group called the BPD Collaborative, both of which connect the CRIB team to other health care professionals around the country. Hopefully, these expansions will help the hospital treat more cases like Mathias’s—and save more lives.
“I feel that Mathias wouldn’t be where he is today if it wasn’t for the care that he received at Stanford [Children’s Health] and the trust that doctors had in us to make the best decisions for him,” Yanet said. “He has made leaps and bounds over the last three years.”