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This episode is an essential listen to learn more about bronchopulmonary dysplasia (BPD)—whether you’re a NICU parent, provider, therapist, nurse, respiratory therapist, or someone supporting a medically complex baby. I’m joined by Dr. Audrey Miller, neonatologist, educator, and chair of the advocacy committee at the BPD Collaborative, for a conversation that’s both informative and honest.
Dr. Audrey is a gifted and compassionate teacher, deeply committed to helping families and clinicians better understand this complex diagnosis. She explains how BPD exists on a spectrum—some babies may go home with low-flow oxygen and a nasal cannula, while others, like my son Donny, fall on the severe end, requiring a tracheostomy and ventilator. Our conversation focuses heavily on that severe side of BPD, because that’s the path we’ve lived—and I truly believe this information can change the trajectory for other families the way it did for ours.
Dr. Audrey said:
“If you’re the only family with a severe BPD patient at your hospital, you can feel very alone and maybe even feel like no one knows what BPD is. When in fact we do, and there’s a large group of people working to do the best things we can for your baby. So one of the ideas with starting the Parent Social Hour is that no matter where you are in the country, you can connect with other parents who have gone through this before—or are currently going through it.”
She reminds us that outcomes can be great in this population. The Collaborative is committed to improving care through research, education, and clinical guidance—not just in the NICU, but beyond, as these babies grow and go home.
We talk about the challenges that both parents and providers face—challenges the BPD Collaborative is actively working to address. These include the difficulty of developing standardized protocols, the mindset shifts still needed at many medical centers, and the reality that BPD is a disease of prematurity with many gray areas and no one-size-fits-all approach. While there’s still much to learn, there is also hope, meaningful progress, and real answers being offered.
I share what it was like to receive Donny’s severe diagnosis, and how frustrating it was to fight for BPD-specific care. Things finally started looking up when we found the continuity and guidance we had been searching for—help that changed everything for our son.
One of Dr. Audrey’s greatest passions is empowering parents to feel involved and confident in their child’s care. She believes strongly that parents aren’t just part of the care team—they’re essential to it.
If you need help advocating or need more answers for your child who’s received this diagnosis you can get in contact with the Collaborative here. (https://thebpdcollaborative.org/)
