I’ve been taking care of really small babies now for a long time, over 15 years. I tend to think of babies being born early as having this superpower. What we understand about the way the brain develops is that babies born early hold on to a lot more of the connections in their brain than full-term babies do. If they would have been inside, where it’s dark, and it’s quiet, they would prune away some of these connections. But babies born early are exposed to their environment and all those lights and sounds, so they hold on to those connections, and that can impact them their whole life.
As a neonatologist, I’m looking over the whole baby. But the area that I love to focus on is something we call neuroprotection. It’s this idea that with everything we do, whether we’re taking care of the heart or the gut, the bowel or the skin, or fighting off infection, we do it in a way that lets the brain develop like it should be developing. If you were to look at a picture of how the brain works and is connected, when they’re older, in school, a preterm baby’s brain lights up more than a baby born on time…I tell parents that’s a superpower and we just have to learn how to use that power for good and not evil.
The key to neuroprotection isn’t any medication or fancy technology. It is keeping a baby connected to their family. Despite the NICU being a place where everything seems out of a parent’s control, our whole job as medical providers should be to give space to the power of families to protect their baby’s health and development. When racism and structural forces make family integrated care less attainable for some families than others, that is not right and can have a lifetime impact. And it’s our job to do whatever we can to fix that unjust system.
These babies are warriors, so what we don’t want to do is do anything that gets in the way of their healing and growth and development. And a lot of what I do is super intensive and invasive. I’ve worked hard with my team to create a whole approach to caring [that is] developmentally supportive [for these] babies. We only do things if we need to do them to keep them safe, and otherwise, we stay out of their way because they got this.
[Doctors] need to listen to families. Future doctors need to learn as much from families who’ve had premature babies as from me. We’ve tried to create some things in our nursery at UCSF to make that more apparent. We have a family liaison, a mom of preterm twins, and now she’s part of the unit leadership and she represents the family voice. We started a family advisory council, just for our nursery, to hear more family voices and they get input into programs we’re developing or propose their own.
In addition to all of that, we’ve been getting super honest with ourselves. We’ve seen the data that race matters for premies…More Black and brown babies are born early, and also, if they’re born prematurely, they tend to have more complications [and] higher rates of death. We have to ask why and try to get the answers. For our Latinx community, too, especially those who don’t speak English, we don’t communicate as well with them as we should and we need to work harder.
So, we’ve taken the data that describes these inequities, and we’ve designed a whole project. We’re doing questionnaires and then interviews with both families and providers—nurses, social workers, doctors—about whether they have experienced racism, either in the clinical care relationship or as providers from other providers. We’re trying to get down to why brown and Black babies have outcomes that aren’t as good as white babies. Hopefully, if we can show how it’s rooted in racism, we can start addressing it more directly and honestly and improve outcomes.