#417 - 🏖️ [COOL TOPICS] - Do NICU Families Have a Seat at the Table? (ft. Silvia Bor)

Silvia Bor, NICU mom to a 24 weeker and Family Advisory Council member for the CPQCC, makes the case for why family centered care must go beyond a philosophy and become a structured practice. She shares how involving parents in quality improvement initiatives, including the NEOBrain early skin to skin project, drives meaningful change at the bedside. She also outlines the CPQCC toolkit for building hospital level Family Advisory Councils and discusses how to identify the right parent advocates, including those whose NICU journeys ended in loss.

Transcript

Ben Courchia MD (00:10.424) Hello everybody. Welcome back to the Incubator Podcast, live at the Cool Topics in Neonatology Conference. We are back and joined by Silvia Bor. Silvia, welcome to the podcast.

Silvia Bor (00:20.44) Thank you. I'm happy to be here.

Daphna Yasova Barbeau MD (00:22.732) Well, tell us about your role at the conference.

Silvia Bor (00:24.43) Sure. So I am a NICU mom. My son was born at 24 weeks and he spent about five months in the NICU. And now I am part of the Family Advisory Council for the CPQCC — the California Perinatal Quality Care Collaborative. We work with hospitals across California, and we have families representing several different hospitals who have come together to put together a toolkit for how different hospitals can increase family involvement — in this case, creating Family Advisory Committees and highlighting the importance of that. What we're advocating for at this conference is simply for hospitals to download our toolkit. We're also going to be asking for two or three hospitals to volunteer so that we can mentor them through the formation of a Family Advisory Council.

The importance of that is that families have such different experiences, and there are so many areas to improve. Every hospital we've worked with has seen a real difference once they actually incorporate family input.

Ben Courchia MD (01:30.958) What's been, in your opinion, the biggest obstacle in getting a Family Advisory Committee together?

Silvia Bor (01:37.666) It's difficult — there are a few different areas. There's budget. There's having staff champions, or someone on staff to actually lead the process. There's the recruitment piece — making sure you get enough families who are interested in joining. Our toolkit helps address a lot of those different areas.

Daphna Yasova Barbeau MD (01:58.776) Can everybody access the toolkit?

Silvia Bor (02:00.588) Yes, they can download it from the CPQCC website.

Daphna Yasova Barbeau MD (02:05.228) I wanted to ask you something else. When you came out and said "I'm a NICU mom" — how long has it been since your baby was in the NICU?

Silvia Bor (02:14.185) My son is six and a half — he's going to be seven in July. And being a NICU mom, that never goes away. I feel like it becomes part of your identity.

Daphna Yasova Barbeau MD (02:20.366) It becomes part of your identity. Yes. Tell us a little bit about that.

Silvia Bor (02:24.206) So Felix — his name is Felix — and he's famous here. I talk about him all the time. He's my everything. The work that I do is for him, it's for other kids like him. And we were there for five months and then we were discharged —

Daphna Yasova Barbeau MD (02:43.246) You told us, but our listeners didn't hear — he was a 24-weeker.

Silvia Bor (02:46.926) Yes, he was a 24-weeker. He was born by emergency C-section. I was in the hospital for a couple of weeks — I developed HELLP syndrome — and then he was in the NICU. It was a long journey. We were there for five months and four days, and he came home on oxygen and with a G-tube. Honestly, the whole NICU experience was life-changing. The staff we had — in five months you build a lot of relationships. I befriended many of the nurses and neonatologists.

One of his neonatologists also worked in the high-risk infant follow-up clinic, and she's actually the one who got me involved in this work. We would go there every month or every couple of months, and I always had ideas — "Next time, the NICU should do this, or try that." And she said, "You should join our Family Advisory Council." John Muir, my hospital, had a hospital-wide council, so I joined. Through that work we were able to create a subcommittee focused on NICU care, and now it's centered on family-centered care throughout the hospital — it includes the NICU, the PICU, Peds, and mother-baby.

Daphna Yasova Barbeau MD (03:56.174) I love that. And family-centered care — it's really becoming a hot topic finally, right? Because we know that parents are equal, if not exceptional, partners in taking care of babies. You're everything. And I wonder, for people who still aren't sold — what is the value of having former parents from your own unit provide feedback to make change in the unit?

Silvia Bor (04:27.074) There's this wonderful quote: you don't know what you don't know. A lot of healthcare providers haven't been NICU parents themselves. So there are things that might seem standard or routine that can be profoundly impactful to families. Having that family perspective really helps to create change — and a lot of the time it's very subtle changes. Not big changes from a healthcare perspective, but huge for families.

It comes down to how you communicate with families, what type of language you use, what the signage looks like, how things are represented. Involving families in quality improvement initiatives makes a real difference. I was part of the NeoBrain initiative at my hospital. For me, it wasn't a lot of work to share my stories and offer my perspective. And for the staff, it was eye-opening — "I never thought about skin-to-skin in this way." I didn't hold my son until he was two weeks old. That was huge. Through that initiative, we were able to decrease the time to first hold — even for babies on ventilators — down to about 24 hours. Which was incredible. If I had had that opportunity earlier, how much more bonded would I have been with my son? Although — he is a little Velcro baby. So we're very bonded. You managed. You managed. We did manage, yeah.

Daphna Yasova Barbeau MD (05:36.654) For hours. Amazing.

Daphna Yasova Barbeau MD (05:50.104) Yeah, but you think about those seven, ten, fourteen days — we come on and off service. We don't even recognize that a parent hasn't held their baby yet in some units. And then sometimes, once that time stretches, it just keeps getting longer and longer. And we don't recognize what a difference that waiting period makes for families.

Silvia Bor (06:18.412) And there are many ways to get families involved. In that particular initiative, one of the things I did was record a short video talking about my first time holding Felix and how important that moment was to me. We were a few years out, and filming that video, I still teared up — talking about how impactful that experience was. It was the first time I truly felt like a mom. I don't think anyone really understood that until they heard me speak about it. They used that video during nursing team trainings to give them that extra reminder: this is why we're doing this. This is why it matters that even though it's harder to do skin-to-skin with a baby on an oscillator — this is why you're learning how to do this.

Ben Courchia MD (06:59.15) What are the attributes of the right parent to join an advisory committee? It may not be for everybody — who should we be looking for? Who should we be asking?

Daphna Yasova Barbeau MD (07:06.392) Who should we be looking for?

Silvia Bor (07:09.326) That's a really great question, and it's something we talk about all the time — it's actually addressed in our toolkit. A few things stand out. First, it's about the length of time since NICU discharge. When a family has just been discharged, that's not the right time. Even if they have a lot of ideas and input, they may be overwhelmed, and they may not yet know what a post-NICU journey looks like. There's also a lot of mental health to consider. We generally think about a minimum of one year post-NICU — and again, that depends on the family.

Second is their ability to be somewhat objective. Some families are still very much centered on their specific experience, and it's really important to be able to see that experience as just one data point and think about how it can be generalized to the broader NICU community. In my case, my son was there for five months — but my experience was very different from someone whose baby was there for a week. If I can take the lessons from those five months and think about how to bring those positive elements into a one-week stay, that makes a real difference.

Ben Courchia MD (08:19.384) Does the outcome of the hospitalization matter? What I mean by that is: there are parents who unfortunately do not have a positive outcome in the NICU — whether their baby experiences serious morbidities, or does not survive. We may be tempted to think there's a specific cohort of parents for whom participation in an advisory committee may not be appropriate, healthy, or helpful. I'm wondering whether everyone should be welcome to join after a certain buffer period — regardless of their NICU experience — or whether there are, almost like exclusion criteria in clinical studies, situations where the experience is so singular that it may not be a good fit.

Silvia Bor (09:14.124) It's a fantastic question. We actually have a great diversity of families on our Family Advisory Council for the CPQCC. We have one family specifically who is here today who lost her child, and she is a phenomenal member of our committee — she's one of our co-chairs. We have enormous diversity. The short answer is: no, it doesn't make a difference what the outcome was. You really just have to have an honest conversation with them and make sure their experience doesn't cloud their judgment when looking at other families' situations. In many cases, they make some of the best advocates.

One of our other families spoke about it on stage — she experienced subtle racial micro-aggressions in the NICU. That experience could have been a reason to keep her at a distance from something like this. Instead, it has made our council richer and has really brought those issues to the forefront for other healthcare providers.

Ben Courchia MD (10:17.722) I was really expecting that to be your answer, but it's something a lot of people wonder about. It's important to highlight that at a statewide collaborative level, you've had positive experiences with every type of parent, and that diversity actually strengthens the cohort rather than harming it. Silvia, thank you very much for dropping by, and thank you for all the work that you do.