Seeking BPD care 700 miles away at Stanford Medicine Children’s Health pays off
If expectant parents Owen and Jamie Brennan had to guess who they’d be most closely in touch with soon after their baby was born, they wouldn’t have guessed a stranger who lived almost 700 miles away. And they would never have imagined the situation they’d be in, that would involve calling, texting, and meeting about their daughter’s care with this person, “hundreds, or maybe thousands of times,” according to Owen.
The stranger was Amanda Moy, NP, nurse coordinator in the Cardiac and Respiratory Care for Infants with Bronchopulmonary Dysplasia (CRIB) Program at Stanford Medicine Children’s Health. Her job—and fervent passion—is to help parents of premature babies like Owen and Jamie’s baby, Bryn, day in, day out, as they navigate care for their child. “As a liaison, I like to be the consistent face that parents see while acting as the communicator between the Neonatal Intensive Care Unit (NICU) and the CRIB team,” says Moy.
A serendipitous meeting
Before they met Moy, the Brennans’ newborn daughter had been in a NICU at a hospital near their home in Boise, Idaho. Bryn was born very early, at 26 weeks’ gestation, and was very small, weighing just over 1 pound. As with many micro-preemies, Bryn’s lungs were underdeveloped, and her need for oxygen support didn’t consistently trend downward as her team hoped. “She wasn’t really making the progress we wanted to see,” says Owen. As the months went on, it became evident that Bryn had bronchopulmonary dysplasia (BPD), also called neonatal chronic lung disease.
A few developments prompted Jamie and Owen to seek a second opinion. One was when a pulmonologist recommended giving Bryn a tracheostomy as a means of breathing support. “When we questioned the reason why it was needed, we didn’t feel we got a medically sophisticated answer,” says Owen. Then, when Bryn’s growth stagnated, a cardiac team found an atrial septal defect (ASD), a hole in the wall between the upper chambers of the heart. This introduced a new layer of complexity: It wasn’t clear if and when Bryn would need surgery to close the hole—and if she did, the hospital where they were wasn’t equipped to perform it. “That’s when we started to look elsewhere for answers,” says Owen.
Coincidentally, Bryn’s grandfather attended an event in Atlanta during this time and was seated at the same table as Moy’s colleague Cecilia Glennon, NNP, MSN, who works in a program similar to CRIB at Stanford Medicine Children’s Health’s Neuro-Neonatal Intensive Care Unit (Neuro-NICU). They talked about Bryn’s situation, and Glennon gave him Moy’s contact information to share with Owen and Jamie. “We reached out to Amanda to ask if she was open to chatting, and she immediately called me back,” says Owen. After a 90-minute call, Moy rounded up the CRIB team for a Zoom discussion with the Brennans. “Bryn seemed just the type of baby that our team could help,” says Moy. The decision to go to California was easy to make, says Owen. “From the first interaction, it was obvious that Stanford [Children’s] was the place we needed to go to.”
Multiple experts, a singular program
On the Zoom call, the multidisciplinary CRIB team—which includes members of neonatology, pulmonology, and cardiology—explained the highly specialized care they deliver for babies who have BPD and who are at risk for, or have been diagnosed with, pulmonary hypertension (PH). PH is high blood pressure in the lungs that causes the heart to work too hard; it is common in premature babies with BPD.
“The reason we developed this team is because the heart and lungs are so interconnected,” says Rachel Hopper, MD, pediatric cardiologist, co-director of the CRIB program and associate director of the Pulmonary Vascular Disease Program at Stanford Children’s Health. “We wanted to create a layered, multidisciplinary way to treat infants with BPD, since it affects several critical body functions,” says Michael Tracy, MD, pediatric pulmonologist and co-director of CRIB. The team cares for babies with varying levels of BPD and uses this experience to develop highly coordinated management strategies for even the smallest and most severely affected preterm babies.
“Pulmonary hypertension can be finicky and capricious,” says Anoop Rao, MD, one of Bryn’s NICU neonatologists, who cares for babies in the NICU on a day-to-day basis. “It can happen at any point in time, and sometimes there’s no logical sequence of events leading to it. We’re navigating many medical land mines with these babies, so it’s important to keep a close watch on all of the moving parts.” The ability to keep track of these moving parts, and to keep specialists aligned on a care plan, depends on intensive coordination.
“The secret of our program is really our CRIB nurse coordinator, Amanda Moy,” says Dr. Rao. “She distills what’s going on across the teams and conducts the ‘orchestra,’” he says. This is especially salient in a NICU, where attending physicians regularly swap out. Moy makes sure that no changes are made to the carefully thought-out care plans of NICU patients who are in the CRIB program, such as a medication adjustment or oxygen titration.
Conducting a carefully coordinated care plan
Bryn was transferred to the NICU at Stanford Children’s when she was 5 months old, arriving with 12 lpm of flow on a RAM cannula—a substantial amount of breathing support. The CRIB team got together to outline a plan of care with a three-pronged strategy that addressed her respiratory, cardiac, and feeding needs. They couldn’t think about her breathing plan in isolation, since it’s interconnected with her growth and feeding and her heart.
“BPD becomes such a multifaceted thing when you look at how the lungs interact with the heart, specifically with ASD and pulmonary hypertension, and the GE [gastroenterology] component as well,” says Owen. “It’s all super-overwhelming. You need a quarterback to help you understand it so you can digest it.” Which, again, is where Moy comes in, making herself fully available to all CRIB parents.
As it turned out, Bryn did develop PH. While that can be dangerous, hers was, thankfully, fairly mild. When a baby has PH, the CRIB team usually optimizes the baby’s respiratory status as a first step. Bryn’s team put that plan in place while starting her on a heart medication to address her PH. Dr. Hopper found that the ASD didn’t seem to be source of Bryn’s breathing problems. Rather, they were due to the BPD and associated PH that resulted from her prematurity. This meant that there wasn’t a pressing need to do heart surgery to close the ASD. “We don’t usually need to close ASDs in young babies, so our plan was to tackle other things first, like her breathing,” says Dr. Hopper.
The team moved to a high-flow nasal cannula, and Bryn started responding immediately. They set a plan to methodically wean (dial down the oxygen support) by just one or two liters a week, while consistently reevaluating her breathing and PH. She’d have intensive monitoring, with weekly x-rays and blood tests, as well as echocardiograms every two weeks. They also paid close attention to her nutrition, since babies struggling to breathe need more calories to grow and put on weight.
Strategies about surgeries
“The plan worked perfectly,” says Dr. Hopper. “Sometimes care teams can be in a hurry to make progress, but with babies like Bryn, we have to be slow and methodical and change one variable at a time.” The team had Bryn down to a half liter of oxygen, according to schedule. The question, then, was whether to close the ASD in her heart. Dr. Hopper’s stance was to go the less invasive route: wait to do a possible ASD surgery or catheter-based intervention until Bryn was older, in case she “outgrew” the need for it.
The matter of the tracheostomy was also resolved. Bryn did so well on the CRIB team’s plan that it became a nonissue. So, the last part of the race was determining whether Bryn was ready to eat by mouth. She’d been getting her nutrition through a nasogastric tube (NG tube) that went through her nose down to her stomach. The team evaluated her and found that she wasn’t able to eat well enough on her own yet. “Often when babies are born so prematurely, they do not have the coordination to feed safely, so it’s common for them to get a temporary G tube to help with feeding,” says pediatric surgeon Stephanie Chao, MD.
“Having an operation on your newborn baby is a very scary thing for a lot of parents,” she says. “But in many ways, it’s a step forward in terms of being able to leave the NICU and go home.” Dr. Chao performed the procedure (G-tube insertion), and Bryn was able to go home about 10 days later.
From the NICU to a new home
Now, the Brennans have been at home in Boise for a month. Bryn is on a low level of supplemental oxygen, which she may only need for a short while, and her PH is well controlled with medication. She is also seeing an occupational therapist and feeding therapist.
At 8 months old (5 months adjusted age), Bryn does tummy time, makes a lot of noises, and can sit up. She likes taking in the new world around her, especially when she goes on walks with her portable oxygen tank. “Her eyes are very big, like a lot of NICU babies, and she likes looking at all of the things to see outside of the hospital—looking at trees and birds,” says Owen.
And although Bryn is seen by local specialists, the Stanford Children’s CRIB team is still involved. “They didn’t say, ‘Good stuff, see you later,’” says Owen. “Amanda has been on top of it all. She’s vigilant in chatting with our local cardiologist, pulmonologist, GE team, and nutritionist.” Dr. Hopper also reached out to the Brennans’ home cardiologist to review a plan to follow Bryn’s ASD and PH.
“I’ve probably texted with the family 60 times since they left,” says Moy. She’s not complaining. “It’s so rewarding to help a family like Bryn’s, when you can take a baby from being stuck on invasive breathing support for five months, to giving parents their beautiful baby to take home on low-flow oxygen, all by implementing a strategy we all worked hard to develop,” she says. “It’s what we do as a CRIB team, and it’s wonderful to see it play out like this.”
Learn more about our CRIB care for newborns with BPD >
