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#209 - 🚀 Graham's Legacy - A Father's Journey to Support NICU Families



Hello Friends 👋

In this inspiring episode of Tech Tuesday on The Incubator Podcast, hosts Ben and Daphna welcome special guest Nicholas Hall, founder and president of Graham's Foundation. Nicholas shares his personal journey of losing his premature son Graham after just 45 days, while his daughter Reese survived after a 119-day NICU stay. This life-changing experience sparked his desire to create Graham's Foundation in 2009 to support other families navigating the challenges of prematurity.

Nicholas discusses the foundation's mission to ensure that no parent goes through the prematurity experience alone by providing a variety of support resources. These include care packages, a mentorship program connecting NICU parents, an engaging MyPreemie app for tracking milestones and accessing information, and more. The foundation has grown to include 40 trained mentors with diverse experiences to help families facing different challenges.

Throughout the conversation, Nicholas emphasizes the importance of encouraging parental engagement and empowering NICU parents to feel confident in their journey. He also shares his perspective on the emotional aspects of running a foundation and the personal growth and healing it has brought him.

With Graham's Foundation, Nicholas has created a legacy honoring his son while making a meaningful difference in countless families' lives. This episode is a must-listen for anyone seeking support or looking to get involved in helping NICU families.

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Find out more about Nicholas Hall and Graham's Foundation here:



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The transcript of today's episode can be found below 👇


Ben Courchia MD (00:00.95)

Hello everybody, welcome back to the Incubator podcast. It is a Tuesday. We have a new episode of Tech Tuesday for you today and we are with Nicholas Hall from Graham's Foundation. Nicholas Hall is a painter, singer, songwriter, and investment advisor. And he has a degree from the University of Indiana, but most notably, he is a NICU parent and the...

 

founder and president of Grams Foundation. Nicholas, thank you so much for being on the podcast with us this morning.

 

Nicholas Hall (00:36.125)

Yeah, my pleasure, Ben. Thanks for having me.

 

Ben Courchia MD (00:38.898)

No, the pleasure is all ours. And you know, I'd like to start these episodes to take really people all the way to the inception story. Can you, can you tell us a little bit about Graham's foundation? What is this exactly?

 

Nicholas Hall (00:47.233)

Mm-hmm.

 

Nicholas Hall (00:51.617)

Sure, yeah, so Graham's Foundation was founded in memory of my son, Graham. The mother of my twins, Jennifer and I, we had a long journey to becoming pregnant, not unlike others that we've met in this journey. So it took us some time to become pregnant. We found out that we were pregnant with twins.

 

and all was proceeding well until the 25th week of pregnancy when Genomers started to be develop high blood, they noticed her blood pressure was becoming elevated and kind of in and out of the hospital for a few days and they finally said, all right, we're going to keep you here. And we were certainly hoping that she would be on bed rest.

 

for many weeks to come, but unfortunately, on Thanksgiving Day 2006, the irony was not lost on me that the doctor said we need to deliver the twins in order to give your babies a chance at life and to save your wife's life as well. So Graham and his sister Reese were born 25 weeks.

 

gestation and you know with twins you know a pound nine ounces and a pound three ounces so and we learn all about the statistics and all the you learn all about that and you know Graham was a little bit less wasn't quite as well along as his sister Reese and I know every day makes a difference so it was a tough he lived for 45 days but you know really never

 

didn't really catch any of the breaks, was never able to breathe on his own. And so just ultimately, you know, infections and just kind of everything sort of mounted and there were no more places to kind of put another, to try another medicine, right? So it kind of, we knew that at that point, the likelihood of survival was limited and if he did, there really wouldn't be any quality of life.

 

Ben Courchia MD (02:53.634)

Mm-hmm.

 

Nicholas Hall (03:20.602)

So it was a challenge, you know, then we had to go to really, you know, kind of a lot of, I recognize now that sort of the impact that had on me and Jennifer and our marriage kind of longer down the road. And I think a lot of parents see that impact as well, because within a few days, we had to go back to the same place that we were just were.

 

with our son because our daughter Reese was still fighting for her life. And fortunately, we did have, as I say, fortunately, we had a long, long stay. If your babies are born early, in some ways, you hope to be there a lengthy time because that means that chances are you've actually had a chance to take your baby home. And so after 119 days, we were able to take our daughter Reese home. And

 

Ben Courchia MD (04:03.947)

That's right.

 

Ben Courchia MD (04:08.682)

Mm-hmm.

 

Nicholas Hall (04:16.217)

And as many parents know, it's a day of celebration, and it's also a day of, oh my goodness, this is all on us, and I've got a question, and I can't just raise my hand and say, nurse or doctor, can you come over here? And can we talk about this? So that's a whole, that's a whole nother experience. And in terms of founding Graham's Foundation, I think I felt,

 

Ben Courchia MD (04:22.379)

Yeah.

 

Ben Courchia MD (04:30.035)

Uh-huh.

 

Nicholas Hall (04:45.265)

I felt this inside of me as because we were there for so long, we were able to see and get to know a lot of other families. You know, and our NICU was a community, kind of a community hospital. So it, you know, we didn't, there was no, these are terms that I know now, there was no family advisory council. There were no parent mentors. There was no peer support.

 

Ben Courchia MD (04:54.757)

Hmm.

 

Nicholas Hall (05:12.149)

We didn't even get a guidebook for the NICU because they were out of print. We didn't get one until we were there for a couple of months. And so, and you're just in a day-to-day survival. So it's like, what do I need? I don't know. I don't know if I'll be here tomorrow. Will I be home? Will I have my babies? Will I not? So it's sort of like suspended animation, but recognizing, seeing what other parents were going through and knowing for myself

 

Ben Courchia MD (05:18.754)

Wow.

 

Ben Courchia MD (05:30.052)

Hmm.

 

Nicholas Hall (05:42.097)

a great job. I had an employer that was understanding. I wasn't living paycheck to paycheck. I was able to get to the NICU every day. Had a supportive family. I had health insurance. So I had all the circumstances, you know, that I had, quote, going for me. And yet it was still an incredibly overwhelming experience emotionally. And it felt very isolating.

 

Ben Courchia MD (05:59.37)

Yeah.

 

Nicholas Hall (06:11.345)

And so I sort of intuitively knew that one, my experience was not personal to me, I suspected. Probably a lot of other families felt that way. And the other piece was that I felt that, medicine tends to get better in a lot of respects, not worse. And so the survival rates for these babies is probably going to continue to just improve and get better. And so what that means is that

 

there are going to be more families that actually need more than just warning the loss of their baby. They're going to need help with managing the transition home, managing probably the learning years with their babies, trying to manage the, and frankly, their own struggles with their own emotions. And so, you know, Graham's Foundation was kind of founded with that simple.

 

Ben Courchia MD (07:01.875)

Mm-hmm.

 

Nicholas Hall (07:09.041)

That simple notion of supporting families that are going through the experience of premature birth, helping to empower them, inform them so that they feel confident in their journey, whatever that journey may be.

 

Ben Courchia MD (07:23.63)

Yeah, I really appreciate that sentiment. And also, I think you guys have articulated that so nicely in your, I guess, your vision slash your mission and values, where you say that your vision is a world where no parent goes through the experience of prematurity alone. And that, I think, strikes a chord for all of us, even as providers, because it is a very lonely experience.

 

Nicholas Hall (07:42.176)

Yeah.

 

Nicholas Hall (07:47.377)

Yeah, and Ben, you know, the vision there is part of that is recognizing that support can mean a lot of different things that I recognize that, you know, some people are, they're like data nerds and they just want to track all the statistics and they want to know. And that's like how they get, that's actually how they get support and how they get relief. Some people want to write. I kind of was a bit of a.

 

a writer, I had a blog and I would share with people how Reese and Graham were doing. And so that helped me feel connected. Some people want that mentor support. They just want somebody to be able to talk to. And that's why we developed over the years a pretty robust and mentor program that we're quite proud of. And some people just...

 

They want to read other people's stories. They want to be able to find something that they can relate to. So that's why we invite parents to share their story through our blog platform or through our social media. So we kind of envision this net that we're there, not just We Grant's Foundation, but all the other organizations that are out there. There's so many wonderful organizations that are all doing their part and trying to, you know, we all have our little niches.

 

And so, you know, our focus is to do what we do, to hopefully do it from a quality perspective, to do it better each and every day. And that we're just one little component of this net that is there, that the parents don't, they don't know it's there because they didn't know they needed a net. They're not aware of it. But, you know, we want to be there when they, when the request comes.

 

Ben Courchia MD (09:38.546)

Yeah, I was going to ask you about that. I just want to have one more question about the inception story of the foundation. In what year did you create Graham's Foundation?

 

Nicholas Hall (09:41.961)

Yeah, yeah.

 

Nicholas Hall (09:49.285)

We created in 2009, so about three years after Reese and Graham were born. The first couple of years, frankly, with our daughter was pretty difficult. She came home on oxygen, fully presented what we thought was hydrocephalus in the NICU, but needed a shunt after we were home for just a month. So we think we're home, and then we're in.

 

a pediatric children's hospital. And so that first couple of years was just really kind of, was really focused on Reese. And then once we felt that she was...

 

fully home and was on the path to being, her development, I felt that, and I share with people, Graham's Foundation was partly to make a difference and partly to help me heal as well. So yeah.

 

Ben Courchia MD (10:49.418)

That's actually where I wanted to go as well, because I think it's always interesting when that urge comes up to embark on this kind of journey, because on the one hand, there's this sense of, you're giving back a tremendous amount to the community, but on the other hand, you're sort of forced to revisit a part of your life that most people would want to put behind them and say, that's over. I don't want to think of Nikkyo again. My daughter is out of the Nikkyo.

 

Nicholas Hall (11:15.582)

Yeah.

 

Ben Courchia MD (11:18.555)

So I think that's tremendously hard. And I'm wondering how do you weigh both components and how do you say, you know what, I want to do this and I want to immerse myself into that world again.

 

Nicholas Hall (11:30.717)

Yeah, I actually from the moment, you know, every, we're all balls of energy and I feel every, you know, in this, you know, my particular, my particular soul, my incarnation just felt the moment this all was happening, I had the approach that the recent Graham chose the right parents for them and that I was prepared.

 

that this journey was going to contribute to me and that I was gonna be open to however it went. Everybody wants, everybody sort of, I think, intellectually wants the miracle story. It's all gonna be great. It's gonna be wonderful. And I was just open to, you know, however it did go and that I would use that journey and that experience to give back in whatever way felt appropriate.

 

that made sense. So I didn't, there was never a feeling of leaving it behind. It was always a feeling of being in it, being of it, and whatever sort of made sense in my intuition. And I, and what, and so just creating Graham's Foundation made sense to me intuitively.

 

It's emotional for me to this day, but I don't fear it. Like I embrace, you know, I embrace the attachment to the sadness, but also, it brings me tremendous joy where I, we're now at a point where there have been parents that have leveraged the support that we provide and they've actually gone on to create their own organizations. So that, you know,

 

Ben Courchia MD (13:23.566)

That's awesome.

 

Nicholas Hall (13:26.233)

And we have the mentor program, partly because we know some parents want to be mentored, but also because we know that for the mentors, that's also a way for them to be able to give back. So that's part of what I think about Graves as an organization. I think for the people that are on our team, almost all of them have...

 

Ben Courchia MD (13:38.975)

Mm-hmm.

 

Nicholas Hall (13:54.121)

have gone through that experience of premature birth. And while I say it's not a requirement to be on the team, but it is a natural, it is natural for parents to wanna be able to give back in different ways. So I'm happy, that's part of what keeps me going with keeping, because ultimately as an organization, you have to do more than just the work.

 

Ben Courchia MD (14:10.306)

Mm-hmm.

 

Nicholas Hall (14:23.369)

whatever the work is, you have to track your books and you have to raise funds and you have to do tax returns and you have to, there's all sorts of the doing of a business regardless of what the mission is. So I also talked to parents, I talked, yeah, yeah. And I talked to parents about, I talked to parents about that as well that feel led or driven to potentially create an organization.

 

Ben Courchia MD (14:36.449)

the less emotional side of doing anything.

 

Nicholas Hall (14:53.289)

And I've gone through that. It's been almost 14 years now. I've gone through times where I've been more engaged or less engaged or really turned on by something or frustrated by something. I mean, it's its own roller coaster. And so, but what's beautiful is that what I need to keep me going.

 

is not, it's not a return on investment. I don't need profits. I don't need the typical kind of things that businesses need emotionally. And as I share with my team and the board and volunteers is that, you know, we at Graham's, we've done the work, we've made a difference. We don't have to, we could.

 

be complete today and it would be, you know, work well done. So every day is an opportunity to make a difference. And if there's support there to continue to do it, if there's a team there, if there's mentors, if there continues to be energy there to make that difference, then we're gonna, you know, we'll continue. And when it no longer, you know, when we just, if or when we decide that the work is complete.

 

then we will make that declaration as well. But we're just, you know, we're pleased that, every day still folks are requesting care packages and they're making requests to share their story. They're making requests for mentors. And so, you know, we're here to make that, we're here to make that difference because parents are making the requests.

 

Ben Courchia MD (16:44.47)

That's right. And so I wanted to go over some of the things that people can actually find on the Grams Foundation website or through Grams Foundation, because you have an array of items when it comes to providing parental support. Obviously, you mentioned already on this episode the possibility of connecting with other preemie parents. You've mentioned the possibility of requesting a preemie parent mentor.

 

Nicholas Hall (17:00.789)

Yeah.

 

Ben Courchia MD (17:12.046)

But you guys also offer care packages and you also have a mobile app. And I'm wondering if you can tell us a little bit about these two things as well.

 

Nicholas Hall (17:15.04)

Yep. Yeah. Absolutely. So it actually, Graham's Foundation started with care packages. And my whole goal there was just to help parents know that they're not alone, right? That there are other parents that are, have been through the journey. And, you know, it had small mementos in there, which we still include like a, a bracelet and a scent blanket. And, and it's all the information.

 

milestone cards, but it's ultimately the preemie parent pamphlet. It is not to replace all the wonderful books that are available and a lot of the resources that are available in the neonatal intensive care unit. It's there really to remind parents that you are a parent and that your voice matters and to take care of yourself. It does include a NICU glossary of terms, so common terms that parents are going to run into.

 

and they're gonna know probably quite well by the time that they're done. But it's really meant, it's a dozen pages long, right? It's meant to be enough to, kind of again, to inspire, to inform, but hopefully to lead them to further reading or further information if that makes sense. So the care package has transformed over the years.

 

Ben Courchia MD (18:23.391)

Uh-huh.

 

Nicholas Hall (18:41.449)

And now it's all like fully branded Graham's foundation. Yeah, it's simple. I mean, we wanna, I've, I'm proud that we've had wonderful supporters over the years like Pampers and Dr. Browns. And my goal has always been, to have branding that can sit next to world-class brands. And so I'm proud of, I appreciate all their support.

 

Ben Courchia MD (18:45.014)

That's a beautiful package. I mean, there's.

 

Nicholas Hall (19:10.657)

because they make a difference in helping us to be able to provide those materials. And one of the things that we do is, so with the care packages, the parents can request them, hospital can request them, friends, family, anybody can request the care package and we ship it directly to the parents. So, you know, people can include a little message to let them know that they're thinking of them. Because a lot of times friends and family, they have no idea what does a parent in this situation need. They...

 

They probably don't know what they need. So the care package is simple. One of our most popular visited sites is what to say and what not to say to the parent of a preemie. Because a lot of folks, and I know we're not the only one that has that information, but a lot of folks don't, how much does the baby weigh? It doesn't really matter how much they weigh. We worry about a lot of other things. You know, if they're weighing too much, then they're retaining water and they're not, I mean, there's a lot of things that.

 

Ben Courchia MD (20:05.408)

Yeah, yeah.

 

Nicholas Hall (20:07.205)

You know, it's like you think it's just an innocent question. You know, like you have no idea where you've sent the parent to. Yeah, I know, right? So yeah, it's a lot of it's a lot of things like that you just have no idea. But we're really proud of the care package. We're also really excited that now parents can request the Spanish only version of the care package. One of our mentors is a native Spanish speaker and

 

Ben Courchia MD (20:11.778)

how charged that question is.

 

Ben Courchia MD (20:28.22)

Mm-hmm.

 

Nicholas Hall (20:34.945)

She also actually, part of her work is helping her employer with translating healthcare documents from English to Spanish. Cause we know it's more than just, you can take it and you can put it in Google Translate and it'll do a literal kind of translation. But sometimes there's some context, especially medical terms that doesn't necessarily translate. And I, yeah, I think probably the native speaker would

 

Ben Courchia MD (20:59.458)

That doesn't, oh yeah. Yeah.

 

Nicholas Hall (21:04.457)

would get that and know that the person is trying. Like when a native Spanish speaker tries English and it's not perfect, but you're like, I get it. It's okay. But we appreciate it. So we wanted to put a little extra effort. And so, yeah, so parents can request a Spanish, now they can request a Spanish only version of our care package. We started with a single mentor.

 

Ben Courchia MD (21:13.998)

Appreciate the effort.

 

Nicholas Hall (21:33.833)

You know, eight or nine years ago, we now have a director of the program. We have 40 trained mentors. They have different backgrounds. They have different, they've gone through different experiences. Like myself, I'm actually one of the mentors. If you're a parent of multiples and you've had a loss while in the neonatal intensive care unit. So that's a very specific experience that I know what it's like.

 

have the loss, then have to go back where you have still a baby in the hospital. So I'm one of a couple of parents that mentor that specific experience. But we also have other languages that parents can request as well. And so we've got the mentor program. We do have the MyPremie mobile app that we've had for, I think it's about eight or nine years now, it helps.

 

parents with, they can journal their experience. They can track the progress of their baby, kind of the feeding, the circumference, the weight, things like that. That again, the data people will enjoy using and you don't have to use it if you don't want to. And then there's the NICU, the glossary of terms, which in addition to the definition of the term, it also has a few questions.

 

that you are suggested that you might wanna ask your doctor or nurse to try and, again, try and encourage engagement. It's all about trying to encourage parent engagement because we know that through our own experience and through others that engaged in parent, that engaged parent helps you mentally, helps you physically, will help you feel, again, really

 

Ben Courchia MD (23:05.186)

Mm-hmm.

 

Nicholas Hall (23:31.133)

to understand that you are a parent and that you can make a difference and your voice matters. And the staff love to see, they appreciate engaged parents I know as well. So they like to feel like they're in partnership with their families and it's incredibly intimidating. And some folks, it was easy for me. That's what I'm just like, you know, I'm one that I'm curious, I'm going to ask, I'm going to, you know, I read every day, nobody told me to, but I brought in

 

I brought my books in and read the recent grams. So it was just things that I sort of did, I guess, intuitively. But I know that that's not necessarily comfortable for all parents, especially I know dads. It can be particularly difficult because it's not necessarily an environment that is always comfortable for them. So yeah, so that's what the app is for as well.

 

Ben Courchia MD (24:31.134)

Yeah, the MyPremi app is available on the App Store. I think if I understand correctly, it was designed also to be used on, I mean, I have it on my phone, but it's designed to be used on iPad. So like you could actually use it on a larger screen. It's beautifully designed. I mean, it reminds me of like, you know, like a Winnie the Pooh book that I had when I was a kid. It looks beautiful. Like the drawings are so nice. And it makes it so much less intimidating because...

 

Nicholas Hall (24:41.481)

Yeah.

 

Nicholas Hall (24:51.029)

Yeah. Yes.

 

Ben Courchia MD (24:59.184)

It looks more like a children's book than an Excel sheet. So that's so nice.

 

Nicholas Hall (25:04.266)

Yeah, and it was originally created by the authors of Primes, the Essential Guide for Parents of Premature Babies. And they wrote the book originally back in the 90s, and they had a second edition maybe 10, 12 years ago, and they knew that ultimately parents, like everything's going digital. And that book was the Bible for us while we were going through our journey, but it's about 500 pages long, right? So it has the real, the kind of detailed information that...

 

if or when you need it is incredibly valuable. But they also saw that folks were moving to digital. And so how do you, and so they actually created it, the original version that was English and on iTunes, on Apple. And they found this artist, Seo Kim. And she is the one that created all the imagery. And we continue to.

 

Ben Courchia MD (25:59.854)

Mm-hmm.

 

Nicholas Hall (26:03.273)

you know, work with kind of the palette of images and designs that she created for the app. So yeah, it is definitely, it definitely does not feel like a medical app. So that was quite intentional.

 

Ben Courchia MD (26:19.354)

No, absolutely not. And then to go back also to, I want to make sure that I bring this up as well as we're having this conversation regarding the care packages. I think it's very important to mention that number one, parents can request these care packages and they will be sent to them for free. And I love the idea that you can opt to contribute and that the foundation operates on a paid forward model, which I really, I really like that.

 

Nicholas Hall (26:46.341)

Yeah. Yeah, I think it's a, you know, it's a, it's just a small way, it kind of, you know, we know how much it costs to create the care package and the shipping and all that and, you know, the pay it forward suggestion, it doesn't quite cover that. But it is a, again, it's just a way to be able to say as the, you know, usually it's a friend or a family that says we appreciate because we didn't know what to, we didn't know what this

 

Ben Courchia MD (26:48.563)

I really like that.

 

Nicholas Hall (27:16.073)

family needs, but we appreciate that you've gone through the effort to think about what this family will appreciate. And here's a way of saying, a small token of what's saying thank you.

 

Ben Courchia MD (27:22.798)

Mm-hmm.

 

Ben Courchia MD (27:30.262)

All the information we're talking about obviously will be linked in the show description. It can be found at gramsfoundation.org. As we're getting near the end of the episode, Nicolas, I wanted to ask you a question and you tell me if it's okay to ask. But on the logo, the logo of the foundation is beautiful. And I'm wondering what the 45 stands for in the balloon that is flying up.

 

Nicholas Hall (27:45.439)

Yeah.

 

Nicholas Hall (27:50.941)

Yeah, yeah. Yeah, Graham lived for 45 days. So sometimes some people notice it, sometimes they don't. But I do get that question. And I remember my dearest friend, Gene Seidman, helped me create the Graham's Foundation logo. And then another friend of mine, Heather, and I just forgot her last name.

 

We were Heather Menzel. I know she helped. She was influential as well and just had the idea, the balloon and just the subtle 45. Sometimes in some of the images, it shows up more than others. But yeah, Graham was with us in body for 45 days. And obviously, he is with me and with all of us in spirit, far beyond that.

 

Ben Courchia MD (28:48.606)

And I think you're doing a phenomenal job in honoring his legacy. And I think that the work done by the foundation is really outstanding. So congratulations.

 

Nicholas Hall (29:00.897)

Thank you. Thanks, Ben. I appreciate it.

 

Ben Courchia MD (29:03.698)

Nicolas, thank you so much for making time to be with us today. It was a very nice conversation and again, fantastic work done by the foundation. And we will link all the resources to the episode page so that people can get in touch with you. Will, if it's okay with you, would even leave your email address for people who want to support the foundation or engage with the foundation in order to give this initiative even more momentum that it already has. Thank you. Thank you so much for making the time today.

 

Nicholas Hall (29:29.953)

You bet, thank you.

 

Ben Courchia MD (29:32.206)

Thank you.

 

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