Podcasts about shaymus

Jazz vocalist Shaymus Hanlin joins us for this edition of Same Difference, as 2 Jazz fans and 1 Jazz musician take in the beautiful ballad "I Fall In Love Too Easily". Join AJ, Johnny and Shaymus as they listen to and discuss versions by Frank Sinatra, Chet Baker, Miles Davis, Carmen McRae, the Harris Hamilton Quintet, and of course the Shaymus Hanlin Quartet!

With the closing of Season 2 the boys say goodbye to a founding member Shaymus as he leaves in pursuit of his growing business They discuss their top 10 foods, and it turns out there is a mutual favorite. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app --- Send in a voice message: https://anchor.fm/toxicshock/message Support this podcast: https://anchor.fm/toxicshock/support

The boys are at it again with a beer from up north. Collective arts brewing: Jam up, boysenberry and blackberry dry hopped sour. Another double album review reveals a familiar band with a new album. Shaymus surprised the boys when he admitted to liking 'every song on the album' Migs is presented with the greatest of mugs Drake reminds the chat that bug type beats psychic type every time. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app --- Send in a voice message: https://anchor.fm/toxicshock/message Support this podcast: https://anchor.fm/toxicshock/support

Shaymus brings Seventh Sons from Columbus to enjoy Migs confesses he knows what things taste like that he shouldn't Shaymus gives a farewell address and announces his departure after season 2 --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app --- Send in a voice message: https://anchor.fm/toxicshock/message Support this podcast: https://anchor.fm/toxicshock/support

The boys are live again reviewing a deathcore album Beers are the darker side of Stella TOP 10: Video games The top 10 reminds the crew why Shaymus was banned from Tony Hawk --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app --- Send in a voice message: https://anchor.fm/toxicshock/message Support this podcast: https://anchor.fm/toxicshock/support

The boys get their hands on southern tier 4 of 5 Live Session, session pale ale. Shaymus finally gets to talk about Tony hawk and rumors of THUG 1 + 2 from Vicarious Visions Lemke talks Duty --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app --- Send in a voice message: https://anchor.fm/toxicshock/message Support this podcast: https://anchor.fm/toxicshock/support

The boys are back with a another week of great beers(even shaymus) and go over their TOP 10 bands of ALL TIME. Shaymus hints at a soft core metal Christmas album for 2021 Discussing dream set up for man caves and streaming rooms --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app --- Send in a voice message: https://anchor.fm/toxicshock/message Support this podcast: https://anchor.fm/toxicshock/support

The boys are back recording separately, drinking good beers (except for Shaymus' Capris Sun) Reviewing Mest and Music to be Murdered by Side B. Eminem's newest #1 Album Drake gives us a breakdown of Marvels future and what's coming to theater and Disney + --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app --- Send in a voice message: https://anchor.fm/toxicshock/message Support this podcast: https://anchor.fm/toxicshock/support

Shaymus, Lemke, Drake and Corey slid into episode 9 with pop tart flavored beers, and a review of trace adkins 2017 album. Some game review and lemke and corey get distracted by a graphics card break down. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app --- Send in a voice message: https://anchor.fm/toxicshock/message Support this podcast: https://anchor.fm/toxicshock/support

A real treat this week as Shaymus is in town with the boys, and 2 beers to review both Ohio breweries and both delicious. Reviewing another metal band, this one the boys seem to like a lot, and then we try to find out how big a shaymus snow shoe would have to be to keep him above the snow. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app --- Send in a voice message: https://anchor.fm/toxicshock/message Support this podcast: https://anchor.fm/toxicshock/support

Shaymus, and the boys review unicorn cereal beer, listen to the Architects (complete with sound effects). Shaymus tries to talk about Tony Hawk again but gets denied. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app --- Send in a voice message: https://anchor.fm/toxicshock/message Support this podcast: https://anchor.fm/toxicshock/support

Shaymus, Lemke Drake and Corey talk about a great week, cracking open giant French sounding beers, review the album of the week (NOT Mercy) and Lots of hours with the new Call of Duty. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app --- Send in a voice message: https://anchor.fm/toxicshock/message Support this podcast: https://anchor.fm/toxicshock/support

New Beers and Bear Bong & Bentley review. More Corey on the 'cast, and our favorite games of all time, Shaymus gets banned from talking about Tony Hawk. --- Send in a voice message: https://anchor.fm/toxicshock/message Support this podcast: https://anchor.fm/toxicshock/support

Shaymus, Lemke, and Drake are back, more beers more games and some weird stories to share! --- Send in a voice message: https://anchor.fm/toxicshock/message Support this podcast: https://anchor.fm/toxicshock/support

Toxic Shock? What's that? It's not a what, it's a who! We are Toxic Shock, Shaymus, Lemke (zak) and Drake have come together to create Toxic Shock podcast, a Shaymus Entertainment Podcast. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app --- Send in a voice message: https://anchor.fm/toxicshock/message Support this podcast: https://anchor.fm/toxicshock/support

There is a set of triplets - Emily, Calm and Shaymus - and each of them have nicknames. When a wizard named Guilt comes and visits them, they soon learn how to combat shame. Learn how the triplets build a bridge of stones to the other side of the Raging River, and how they learn about forgiveness.

Listen to Shaymus Hudson of Massachusetts Institute of Technology (MIT) discuss interesting new developments at MIT as well as his roots and experience in the metals and heat treat industry.

Laura Martin. Photo courtesy of Laura Martin. Episode 6 features Laura Martin, expert parent, mom blogger at Joseph at Home, and the Director of Parent Communication and Engagement at Graham’s Foundation—a non-profit organization that supports parents of premature infants. During the episode, Laura shares her son Joseph’s story of prematurity and survival including his near fatal bout of late-onset NEC and the multitude of life-long complications that have resulted. She discusses: The extremely premature birth of her twin sons, Joseph and Campbell, at 24 weeks—four months early, and Campbell’s passing at 23 days of life, How Joseph developed late-onset NEC and lost two-thirds of his small intestine, Several of Joseph’s secondary diagnoses including Short Bowel Syndrome, Auditory Neuropathy Spectrum Disorder, Eosinophilic Esophagitis, and multiple food allergies—all resulting from NEC, How hers and her family’s experience with prematurity led to her work at Graham’s Foundation, Her personal blog where she documents her daily life as an expert parent of a child with special needs. Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. This episode was produced in part by the TeacherCast Educational Broadcasting Network. [powerpress] STEPHANIE VAUGHAN, HOST: Welcome to Episode 6 of Speaking of NEC—a free, audio podcast series about Necrotizing Enterocolitis. Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure. For more information about this podcast series or The Morgan Leary Vaughan Fund, visit our website at morgansfund.org. Hello, my name is Stephanie Vaughan. Welcome to the show. I’m the Co-founder and President of The Morgan Leary Vaughan Fund. NEC is the leading cause of Short Bowel Syndrome or Short Gut Syndrome. The amount and location of intestine lost can result in life-long medical complications. Up to now, we’ve discussed NEC and its most common complication from the perspective of the neonatologist or surgeon. However, I feel that it is equally important to share the parent’s perspective. I’m privileged to have one such expert parent as my guest today. Laura Martin is the mom blogger at Joseph at Home, and the Director of Parent Communication and Engagement at Graham’s Foundation. She is also the parent of a fellow surgical NEC survivor. Laura will share with me today her son Joseph’s story of prematurity and survival including his near fatal bout of late-onset NEC and the multitude of life-long complications that have resulted. During our conversation, she will discuss in varying degrees: The extremely premature birth of her twin sons, Joseph and Campbell, at 24 weeks—four months early, and Campbell’s passing at 23 days of life, How Joseph developed late-onset NEC and lost two-thirds of his small intestine, Several of Joseph’s secondary diagnoses including Short Bowel Syndrome, Auditory Neuropathy Spectrum Disorder, Eosinophilic Esophagitis, and multiple food allergies—all resulting from NEC, How hers and her family’s experience with prematurity led to her work at Graham’s Foundation, Her personal blog where she documents her daily life as the parent of a child with special needs. With that in mind, let me introduce my guest today. This is Laura. Hi, how are you? LAURA MARTIN, GUEST: Hey, good. How are you? STEPHANIE: Good. Thank you for joining us. And Laura is a blogger at Joseph at Home and the Director of Parent Communication and Engagement at Graham’s Foundation. So I will let you introduce yourself and talk to me a little bit about your experience with prematurity and Necrotizing Enterocolitis. LAURA: Yeah. Our twin boys were born at 24 weeks gestation on Halloween morning in 2009. It came as a big surprise. It had been a perfectly clean, normal pregnancy. I had just had an appointment three days before, woke up with a dull backache about midnight. And Joseph was born first at 7:41 and his twin brother Campbell at 7:42. No rhyme or reason for the prematurity. It just happened. Campbell, unfortunately lost his battle to prematurity after 23 days of life. He just had a lot of complications from prematurity that he just couldn’t have overcome. Joseph went on to spend 228 days in the neonatal intensive care unit before he came home. He is now five and a half. He just started kindergarten. But it’s been a long journey to get here. We were two days from coming home when he was 5 and a half months old. He was about eight weeks adjusted. We had everything set up at home. We had oxygen. We had G-tube equipment. We had everything. We were ready. His room was ready. All of the clothes were washed. Two days before discharge, we got a call from the NICU that he was gray and bloated. And they were putting him on a ventilator. Let me back up a little bit. A few days prior to that, he had been showing some signs of infection. But nobody really knew what it was. He just had vaccines. He was running a little bit of fever. We contributed it to that. This pushed discharge back a little bit. But just two days before the initial discharge, when they called and said he’s gray and bloated, and they were putting him on a ventilator. You need to get here immediately. Our world kind of turned upside down, because we thought we were two days from home. And here we were not knowing what was going to happen. This was a Saturday, the day before Palm Sunday, 2010. And we didn’t know what was going to happen. The doctors kind of watched him throughout the Saturday, were taking X-rays every few hours. A little bit after lunch that day, one nurse practitioner came and said, his X-ray looks a little bit like NEC. Do you know what that is? And we said, of course, we know what that is. We’ve been in the NICU five and a half months. But he’s eight weeks adjusted. Why would be looking at NEC? We’ve been told once you get to your due date, you cross that off your list of things to worry about. And so, as the day went on, the night went on, it became very evident that he had Necrotizing Enterocolitis. They had seen this one other time in the NICU with a baby this old. He went through Saturday night. Things were not looking good. And on Sunday morning, the surgeon came to us and said, I’m going to take him to the OR. I’m going to open him up. And I’m going to see what happens. We don’t know what we’re going to find. So, on Palm Sunday, 2010, the surgeon took him to the OR. He was gone for several hours and came back halfway through surgery and sat us down in a room and said, here’s what I found. He has 41 centimeters (16 inches) of salvageable intestine. He said, he has 28 centimeters (11 inches) below his stomach, and he has 13 (5 inches) above his colon. Everything else in the middle is completely gangrenous. He said, we can take out the gangrenous intestine. And he’ll have two stomas for a while. Then we’ll go back in and reconnect. But he also looked at us and said, we don’t know what life for him is going to be like. It’s probably going to be very rocky. He may die before the age of two waiting on a liver transplant, because he’s going to be TPN dependent. If you want to close him up and let him go, I’ll respect your wishes. And, of course, we looked at him and said, no way, we’ve gotten this far. We’ve already lost one kid. We’re not doing this again. Go in there. Do what you have to do and save his life. So he went back. He was gone for several hours, came back to us. We saw Joseph, and it was amazing. Even though he had stomas, and he had just lost two thirds of his small intestine, he looked so much better than he had right before he went, because the infection was gone. A few days after that, they went in and placed a central line, because he was, of course, totally TPN dependent. He already had a G-tube before NEC, because of aspiration to his lungs. So we were fortunate with that that he already had the G-tube. But, as the weeks wore on, they were able to slowly decrease TPN, increase feeds, and decided after four weeks, he was ready for intestine reconnect, which was shocking. Nobody expected after four weeks he would be ready for intestine reconnect. So four weeks later, they went in, reconnected the intestines, told us we would probably be in another two to three months. He again amazed everybody—came off TPN very quickly, increased G-tube feeds to the point that they pulled his port before he came home. He never came home with a central line. And four weeks after his reconnect surgery, he came home—after 220 days in the NICU. STEPHANIE: That’s amazing. LAURA: So that’s how NEC came to be. Again, the hospital had seen one case of that. And it had been years and years and years. And people say, are you sure it’s NEC? Are you sure it was NEC? Yes, pathology confirmed that it was NEC. But who knows? Who knows why he had it at five and a half months old. STEPHANIE: Right, right. So just to back up, I’m curious what you knew about NEC before his surgery. You know, you had said that you had been in the NICU for now almost five months. And he reached his due date, so you were crossing it off the list. So I’m just curious, in general terms, what you knew up to that point. LAURA: NEC was one of those things that I remember learning about really early on in our NICU stay. Having 24-week twins, we knew that it was a very rocky journey. They both had less than 50% chance of survival. But my husband and I were the type that we wanted to know everything. We wanted to know what are things we have to look out for. What are things we need to be worried about? What are things that we don’t have to worry about? And it was within the first 24 to 48 hours that the nurse said there’s a thing called Necrotizing Enterocolitis. It doesn’t happen a lot. But it’s one of these things we watch for. We stay on top of it. So we knew about it from the beginning, but we had always been told that once you reach the gestational due date, you didn’t have to worry about it anymore. And while that is so true 99.999% of the time, there is a very small chance that it can happen later. And it’s almost one of those things I wish we had never been told—oh, yeah, you don’t have to worry about it when you hit 40 weeks. Because we did—we had completely crossed it off Right. So we know about it. And we knew what the warning signs were. We knew what to look for. Yet, again, when we look back on it, he had some of these warning signs two to three days before he got really, really sick. But why would—none of us thought it could be NEC. We thought, well, he’s had some GI issues. He has the feeding tube. He’s had his vaccines. It could be any other bug he’s picked up. He’s still in the NICU. But we knew what it was, but it was still just a huge shock that—I mean, he was 13 pounds at that point. He was a big kid, you know, for being in the NICU. STEPHANIE: Right, right. So he came home now, you said, four weeks after he had been reconnected. So talk to me a little bit about, I guess, those first days and first months when he was coming home—you know, again, sort of thinking from the perspective of things that we want to let parents and caregivers know, questions to ask, sort of things to look out for—so anything that you want to talk about, you know, his transition home and getting settled. LAURA: Yeah, he came home on complete continuous feeds via G-tube. So he was on feeds 24 hours a day because, of course, having NEC left him with short bowel syndrome. So he had a lot of dumping episodes, where it was out of control at times. We couldn’t really go anywhere because of the dumping syndrome. As the days went on, the weeks went on, the months went on, that got a little bit better. We were in and out of GI every 8 to 12 weeks, just checking in, making sure he was gaining weight. But a lot of doctors also didn’t really know what to do because he wasn’t TPN dependent. A lot of kids who come home with short bowel syndrome are TPN dependent. But here you have this kid who has only a third of his small intestine, but for the most part he’s tolerating formula well. He’s tolerating G-tube feeds. He’s gaining weight. He’s not going to need a port. Everybody was convinced he would have to have his port put back in. He never did. So that was actually, to be honest, a frustration for the first several years, is finding doctors who understood that, yeah, he is doing well. But he’s also not doing well. He only has a third of his small intestine. His weight gain is very slow. He still has periods of severe pain even today, from school. He still has periods where his belly is very distended. It took some time to find doctors who really wanted to help and say, yes, there really is still a problem here—with a kid who only has a third of his small intestine. That first year that he was home, he was rehospitalized five or six times, most of those with a GI bug. If he got any sort of stomach bug, we were in the hospital, because his body just couldn’t handle it. And so we were back in. Usually it would lead to a respiratory infection. He would spend a good week, 10 days, in the hospital. That was the first year. After that, I quit my job teaching, because we knew he had to stay home. He had to be healthy. And he had to grow. And as he’s gotten bigger, he’s gotten healthier. He has not been in the hospital for a GI bug in 3 and 1/2, 4 years. It’s been awhile. STEPHANIE: Oh, that’s great. LAURA: Yeah, now his body can tolerate it. You know, it’s not pleasant still. But we know what to do. But, as he’s gotten bigger, it’s gotten better. So, yeah, that was the first few years out of the hospital. STEPHANIE: We don’t have nearly the after-effects, but I remember Morgan’s transition home was pretty chaotic. LAURA: Yeah. STEPHANIE: His brother came home after 85 days, and I’m guessing was a much simpler transition, even just holding him in hands-on care and changing diapers. Morgan was very traumatized, I think, from being in the hospital and having the surgery. And we saw a big, big difference between him and his brother. So it was very scary as a parent that even simple things that you have to do was traumatizing to him. LAURA: Right. And then they can’t communicate with you to tell you that. And that’s what was so hard to watch early on, was you knew he was hurting. You knew he was in pain. But I didn’t know what to do to help, you know. So that was hard. Yeah. STEPHANIE: So, I guess, now that he’s getting a little bit older—you said he started kindergarten. That’s great. So how is he doing, I guess, developmentally? And are you seeing anything—you know, secondary diagnoses, I guess, maybe, strictly because of NEC or because of the short bowel or other issues that he’s having? LAURA: Yeah, he has several things that are going on. He did just start kindergarten. He’s in a special needs kindergarten. As a result—well, when he had NEC, he had to receive Gentamicin, which of course is an ototoxic drug. And the surgeon said, if we give this to him, he will probably lose all of his hearing. But if we don’t give this to him, he’s not going to live. Well, of course, it was a no-brainer decision. Before that, he had not passed his newborn hearing screening. But a lot of preemies don’t. So we kind of thought, well, we’ll get out of the NICU, he’ll pass it. He never did. While he was still in the NICU—this was in between NEC and the reconnect surgery—he was diagnosed with Auditory Neuropathy Spectrum Disorder, which is a hearing loss that comes and goes. It’s almost like you’re trying to tune a radio and there’s static. And that was what his hearing was like. So he received his first cochlear implant when he was three—three months after he turned three—because his hearing was rapidly deteriorating in his left ear. Just, not even two weeks ago, he received his second cochlear implant in his right ear. And we always go back to say, his hearing probably would have never been that great. But it’s definitely a lot worse post-NEC, because he had to receive the Gentamicin, the ototoxic drug, in order to kill the bacteria. Some other things that he has—July of 2014, he was diagnosed with Eosinophilic Esophagitis, which has been in question for several years. And we could not get the GI doctor to agree to do an endoscopy. He hated to do the endoscopy, because it meant putting him under sedation. Due to asthma, he didn’t want to do that. But at the same time, we’re battling with this increased amount of food allergies, knowing that that has to be a problem. Finally, they agreed to do the endoscopy. And it was clear that he had Eosinophilic Esophagitis. As a result of that, he has 15 food allergies. I’m happy to list them all if you want. But it includes all of the top 8 plus beef, chicken, rice, potatoes, watermelon, strawberry, pineapple, and a whole slew of medications. And I always tell people asking—it’s hard to know whether he would have had that regardless. Probably not. But having the Short Bowel Syndrome made it worse. He would not have had Short Bowel Syndrome if he didn’t have Necrotizing Enterocolitis. So to me it’s all sort of related. STEPHANIE: Right. Right. There’s definitely a domino effect. LAURA: It’s a domino effect. One thing has led to the other, which has led to the other. So it’s hard to know, some days, if you’re battling GI issues because of Short Bowel Syndrome. Or are you battling GI issues because of the Eosinophilic Esophagitis? Or are the white blood cells growing because he’s eating something he’s allergic to? Is there a new allergy? So some days we really struggle knowing what is what. And then you’ll have periods where he does great. And he’s like a normal kid. He does still have a G-tube. We were told he would lose the G-tube by two. But here we are almost six, and we still have the G-tube. Many days I wish we didn’t. But there are many days we couldn’t do without it. And if he doesn’t feel like eating or he’s in pain, we have the G-tube. And it’s literally been a lifesaver. And if he’s been sick, we can always get fluids in him. I would love to see it go. But I don’t see it going any time in the future. He doesn’t know life without it. He’s had it since he was four months old. To him it’s second nature. He gets his G-tube feeds at school. He gets them at home. They travel with us. But it’s truly a lifesaver for him. But it helps him gain weight. It’s what helps him actually be on the growth chart as a short-bowel kid. Many short-bowel kids, I think, are failure-to-thrive. He has never even been remotely considered failure-to-thrive, which is huge. So, yeah, there’s a lot of complications as a result—what I feel like, had he not had NEC, wouldn’t have led to X, Y, and Z probably. He does have development delays. But a lot of it is that he spent so much time in the hospital. Then there was the hearing issue, but he could not get a cochlear implant because he wasn’t healthy enough to have surgery. So it was just sort of this domino effect, and a spiral of getting out of it, and getting him healthy enough to be able to have surgery. And then you’re trying to catch up. You’re trying to catch up with language, fine motor, gross motor, it all, as well. But the kid we were told would never walk or talk, walked into kindergarten last week. So there’s so many things to be thankful for, and so many things that he’s doing so well on, that those are the days you really have to hold onto on the days he’s feeling really, really bad. You have to know that he’s going to get through it. Life will turn around, and it will get better. It’s just going to be interesting to see as he continues to grow, how much of this is just going to continue to get better. Will there be a decline at some point? We don’t know. Nobody really thought he would even make it to this point. STEPHANIE: Now, I’m just curious, sort of, personally, but also as a fellow parent of a NEC baby, have you talked to him at all about being in the NICU? Has any of that come up yet? I mean, I know he’s still sort of young. But I’m just curious. LAURA: Yeah, he knows he was in the hospital. When we drive by the hospital where he was born, he’ll say, that’s where I was born. That’s where my sister was born. He has seen pictures. He’s seen videos. But I don’t think he quite cognitively wraps his head around it. When he had a cochlear implant put in 10 days ago, it was at the hospital where he had NEC. And so we were able to kind of say, you were in the hospital here when we are a baby. A couple of the nurses stopped by to see him—they took care of you when you were a baby. But the cognition is just not quite there too. He sees his pictures. And he’ll say, I was very sick. And, yes, you were very sick—because he knows that his baby pictures look very different from his sister who was born full term. So he knows. He knows he has a G-tube. She does not. And so he’s starting to really realize those differences. STEPHANIE: Right. Yeah, I don’t think we’ve quite reached that yet. Shaymus deals with asthma. So he gets his puffs and he has, you know, different things. But I don’t think they’ve really lined up and taken notes on, you know, your picture has this. And my picture has that. Or you have this and I have that. But, yeah, sort of, it’ll be interesting to talk to them about it when they start to ask. Like, they just figured out that they’re twins this year. LAURA: Oh, that’s so funny. And my husband and I have talked about it. Gee, at what point in their life are they going to realize everything that they went through as a baby. And all these odds that were stacked against them. And all the times that they shouldn’t have lived. And will they be teenagers? Will they be adults? Will it be when they have their own children? My husband and I talk about this a lot. It’s just going to be interesting to see at what point do they kind of go, oh, wow, yeah, that really was what mom and dad went through and what I went through. It’s just fascinating. STEPHANIE: Yeah. So I would also like to let you talk about the work that you’ve done now because of having preemies and Joseph’s diagnosis. So you are the Director of Parent Communication and Engagement at Graham’s Foundation. So I’m happy to let you plug them away, and also to talk about your blog, which is Joseph at Home. LAURA: Yeah, I'll start with Graham’s Foundation first. I started working for them, gosh, about three and a half years ago in a different capacity. And it was one of those things that I was staying home with Joseph. And I was trying to figure out a way that I could give back to the preemie community. But I knew I couldn’t go into the NICU, because here I was with this child who got sick easily. And I knew that that couldn’t happen. So I started working for Graham’s Foundation, which was such a great outlet to be able to connect with other preemie parents, and sort of share stories—share stories with families who lost their child, with families who went through a long-term NICU stay, families who went through a short-term NICU stay. People will say, well I was only in the NICU 10 days. You were in seven and a half months. One day is one day too long for anybody to be in the NICU. And that’s what I always say to people. Nobody should have to go there. And if I can provide any sort of “it’s going to be OK,” I would love to do that. And so now, I serve as the Director of Parent Communication and Engagement. I do a lot of the writing for the blog for Graham’s Foundation, which is something we’re really trying to get off the ground. And through that, I also serve as a NEC mentor. So if parents come across our website and are looking to talk with someone who has experienced NEC, in no way am I a medical professional but I'm able to say: This is what we experienced. This is what we’re experiencing now. These are some questions you might be able to ask the doctor. And it’s been really nice to connect with people. Also, being five years out, to say, I promise you are going to get through this. When you’re dealing with, all along, doctor’s appointments, and you feel like you’ve got 18,000 things going on in one week. I’m here to tell you that I promise you, it gets better. The appointments get less and less and less. And it’s been so nice to connect with parents, and to offer that support from home, while I can still stay home with my kids and be able to work from home. And then also I have my personal blog, josephathome.com, which I started when I found I was pregnant with twins. I didn’t even share the blog address with anybody. My husband and I thought, oh, this will be great. We’ll update it. We’ll send it to friends and family. So as the pregnancy rocked along, I would sort of update it. I could never send out to anybody. And then when they were born Halloween morning, 2009, at 24 weeks gestation, I knew I didn’t have the energy to tell the same story over and over and over about what was happening. The texts were too long to send the information of what was going on. We had two of them, and I just couldn’t do it. And I was, like, oh, I’ve got this blog. This will be a great way to update people, so the long days of sitting in a hospital, my husband worked on our family tree. And I worked on the blog. That is just what we each sort of did to take our mind off of what was going on. And it was a great way, if somebody asked me a question, I would just say, read the blog. It’s on the blog. Just read the blog. I could share pictures—it just—because I wasn’t really in the mood to talk. We would talk to family, immediate family, and share with them what was going on. But it was just—it was so draining to tell the same story over and over and over. And if I just wanted to get something out there quickly, I would put it up. So, when Joseph came home, and I thought, well, I’ll keep it going. We’ll see what happens. It’ll probably die by the wayside. Well, five and a half years later—it’s almost six years later—it’s still going. And I write a lot now just about, of course, about prematurity, but also raising a special needs child and what that looks like, because we’re in this short-bowel world. We’re in the eosinophilic world. We’re in this hearing-loss world. We’re in the cochlear-implant world. We’re in the vision-impaired world. We’re in the mild cerebral palsy world, food-allergy world. And it’s just been nice to be able to connect with other parents and just to write about our real life and what it’s like. What it’s like. How do we deal with insurance? How do we deal with medical supplies? How do we travel? How do we do this, that, and the other? And it’s just a great outlet, too, just for venting, you know. And if I don’t want to talk about it, I can write about it. So we’ll see where it goes. It’s been a really nice outlet. But it’s also a great way to show Joseph, hey, this is where you started. This is where you are now. And it’s almost like a scrapbook, really, of his entire life, because it started the day he was born, and has everything. I just hit my—over 1,100 entries on it. STEPHANIE: That’s great. I commend you on that. I attempted, when I first came home from the hospital, to start recording things. And, I think, honestly, it was just too hard. I sort of thought to myself, I don’t want to remember this piece of it, so I sort of stopped. And I had scraps of paper where I would write down stats every day. You know, they gained this, and literally had, like, a pile two inches thick, by the time they came home, of daily weights and charts and things. Yeah, I mean, I’ve seen many of your posts. And I think they’re great. And I think it’s a great outlet. And, again, sort of that you’re not alone. And, you know, people are better off than you. People are worse off than you. And everybody’s sort of on their own journey. And I know preemie parents tend to minimize amongst other people, but your struggle is really your struggle and your family’s struggle. And no one should have to struggle. LAURA: No. And that’s what I’ve always said to people is, somebody out there always has something worse going on. Like, on Joseph’s worst day, somebody else has something worse going on. And that’s what I always say to people is, yeah, this is just our life in a little nutshell. But we’re so thankful for what we have. And, again, it could always be worse. You can just turn on the news every day and see that. But if it’s just, you know, if it can help one parent to say—and even sometimes I think people don’t like to say, well, this is not fair. You know what, sometimes it’s not fair. And it’s OK to say that and have a little pity party and then move on. And I enjoy being able to say to people sometimes. STEPHANIE: That’s great. So, I guess, is there anything else that you would want to mention if you had somebody in your position, however many years back, thinking to ask the doctors about, or transitioning home—coming home—how you sought out your specialists, if you’re not getting the answers that you think you should, how you proceeded, any sort of big-sisterly advice. LAURA: Yeah, I know, really. I think the big thing is to trust your instincts if you know that there’s something not right. We’ve gone through our fair share of doctors. Because if I feel like my child’s not getting the care that they need—and any parent would feel this way—I’m not going to settle for mediocre. I’m not going to settle for “he’s going to be fine” when you know in your heart that there’s still a problem. We were having some issues last year around the whole eosinophilic diagnosis. And I felt like we had run out of options where we live. And so I reached out to a doctor eight hours away. And he said, if you’re willing to travel, I’m willing to see him. I said, of course, we’re willing to travel. And so we did. He got us in. And we made the trip. And it was so nice to just connect with somebody who was a specialist in that field of Short Bowel Syndrome, to be able to say, yeah, he’s doing OK. I see that there are some problems. But you’re doing the right thing. And I think that’s become sort of my mantra is, don’t stop until you have the answers that you need. And there may not be answers. But I am not going to rest until I know that we have the answers we need. Like, we’re having some eosinophilic issues, so we’re working on getting into a top eosinophilic clinic. I don’t care how far we have to travel, because that’s what Joseph needs and it’s what’s best for him. And that’s what matters. It matters him feeling good. It matters him being healthy. It matters him growing. And he deserves to have the best life absolutely possible. And that’s what I would tell somebody if you’re just coming home. If you feel like something is not right, keep going and keep going and keep going. Yes, it’s exhausting. I think there are many days I’m asleep before my head even hits the pillow. But you have to do what’s best for your kid, because they can’t do it for themselves. You are their advocate. And that’s one thing that the NICU nurses taught us really, really early on—is you have to advocate for your child. Nobody else is going to do it for you. They can’t do it for themselves. You just have to keep going. And, again, it’s hard. You may hit brick walls here and there. Because goodness knows we’ve had our fair share with doctors. And it’s OK with doctors to speak your mind and say, you know, I don’t think you’re right on this. I think there’s more to it. You may upset them a little bit, because there’s no doubt I’ve upset a few. But it’s OK. It’s OK. Yes, they’re doctors. But they don’t have all the answers. You’re the parent. You live with your child day in and day out. You know their idiosyncrasies. You know what’s right and what’s wrong with them. And I think standing up for yourself is so important. And that’s what I would tell somebody coming out. You can’t be shy when it comes to advocating for your child who has special needs. STEPHANIE: I would agree. Yeah, we’re transitioning through preschool. And the boys were kindergarten eligible this year. But they’re actually being given an extra year of pre-K. And we had sort of that, uh, I’m not sure about this. I’m really not sure about it. I’m really not sure about it. And in the end they saw that—their teachers agreed with us. And the educational system agreed that, yeah, they’re a little bit immature. And probably going to kindergarten isn’t the best idea for them. And they really need the extra year. You know, they’re smart. Yes. But good enough isn’t good enough. We don’t want them to sort of eke by. We want to give them the best opportunities that they can have. So I agree with you wholeheartedly. LAURA: And it’s tough as a parent. I’ve had this conversation with a lot of people. My husband’s a teacher. I’m a teacher also. I’m not teaching right now. Hopefully one day I will be again. But it’s hard as a parent. It’s hard as a parent-teacher to have a child who has special needs and who needs that IEP (Individualized Education Program). It’s tough to sit on that end of the table as a parent. I mean, I’ve sat on the other end of the table as a teacher countless times. But, as a parent, it’s a tough pill to swallow, to say—and we know—I mean, Joseph started kindergarten. But we know full well he may need to repeat kindergarten. And while that’s tough to say, it’s a reality. We hope that he does great. But he may need to repeat. And if that’s what’s best for him, then that’s going to be what’s best for him. It’s tough to sit in an IEP meeting and hear how far behind he is. Or these are all the goals. And up to 21 pages now of his IEP. But it’s what he needs. And it’s what’s best for him. But I always go back to the day when one of our favorite NICU nurses—this was a long time ago—said, you know, one day he’s going to pull out a picture of him with all those tubes and wires and on a ventilator and say, see, mom, you remember this. And I have to think back to that, because, yes, it’s hard. And I kind of want to wallow in self-pity about, oh, I wish he was just in a regular ed class. He shouldn’t even be here. And that’s what I have to remind myself is, we had many days where we weren’t even sure we would see pre-K. And I know you’re the same way. We weren’t even sure he would see kindergarten. But here we are. And let’s just make the most of it. He’s loving every second of it. And that’s what matters. And so, being a preemie parent, as you know, it’s a journey that I never expected. But at the same time, I’m grateful for it, because it’s opened my eyes to a whole new area of life. STEPHANIE: Right. Well, I really appreciate you talking to me. And I think you’ve given some great advice—preemie parents or not, and NECs parents or not—on advocating for your child, and in every facet. So I really appreciate your time. And thank you so much. And if there’s anything else that you want to add, feel free. LAURA: If anyone wants to contact me personally, I’m happy to answer questions if there’s something that anybody wants to know more about. STEPHANIE: So great. Thank you. Thank you so much. LAURA: Thank you. STEPHANIE: For more information about Laura or to follow her blog, visit: josephathome.com. A direct link can also be found in this episode’s show notes. You can also email Laura directly at: laura [at] grahamsfoundation [dot] org. In closing, I’d like to share a few thoughts about today’s conversation with Laura. According to Dr. Besner, with whom I spoke about Short Bowel Syndrome in Episode 1, “if we estimate that a newborn baby has approximately 200 centimeters (78.74 inches) of intestine, they have to be left with at least 40 centimeters (15.75 inches) in order to be able to nourish themselves and get off TPN.” As a result of his bout with NEC, Joseph had only one centimeter (0.4 inches) more remaining. So first, I would like to take a moment to celebrate Joseph’s survival, courage, and strength. And that of his family. Both Joseph and his parents have shown remarkable resiliency while dealing with the daily effects of his bout with NEC. Second, I would like to reiterate that I strongly believe that a cure for NEC, once found, will have a far reaching impact not only on Gastroenterology (the digestive system and its disorders) as a whole, but also all of the patients like Joseph, and families like Laura’s. Show your support for our smallest and most fragile babies, those who have the greatest risk for developing NEC. Show your support for continued research in NEC. And join our effort to raise awareness about, and funds for research in NEC by making a donation to Morgan’s Fund at morgansfund.org/donate. If you’ve had a personal experience with NEC and would like to share your story, or have a question or topic that you’d like to hear addressed on our show, e-mail us at feedback@morgansfund.org. We’d love to hear from you! Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. The opinions expressed in Speaking of NEC: Necrotizing Enterocolitis (the Podcast series) and by The Morgan Leary Vaughan Fund are published for educational and informational purposes only, and are not intended as a diagnosis, treatment or as a substitute for professional medical advice, diagnosis and treatment. Please consult a local physician or other health care professional for your specific health care and/or medical needs or concerns. The Podcast series does not endorse or recommend any commercial products, medical treatments, pharmaceuticals, brand names, processes, or services, or the use of any trade, firm, or corporation name is for the information and education of the viewing public, and the mention of any of the above on the Site does not constitute an endorsement, recommendation, or favoring by The Morgan Leary Vaughan Fund.

Dr. Martin Lee. Photo courtesy of Prolacta Bioscience. Episode 4 features Dr. Martin Lee, Vice President of Clinical Research and Development at Prolacta Bioscience. During this episode, Dr. Lee provides a comprehensive overview of a 100% or exclusive human milk diet in the prevention of NEC in extremely premature babies, those weighing less than 1250 grams (2 pounds 12 ounces) and who have the greatest risk for developing the disease. He discusses: * His transition from the blood industry to Prolacta, which developed of the world’s first human milk-based human milk fortifier * What constitutes a 100% or exclusive human milk diet * The clinical evidence showing a 70% reduction in NEC, an 8-fold reduction in surgical NEC, and a 4-fold reduction in mortality through the use of exclusive human milk diet * The importance of safety in the breast milk industry, including Prolacta’s rigorous product testing and donor safety profiles which parallel blood industry standards. Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. This episode was produced in part by the TeacherCast Educational Broadcasting Network. [powerpress] STEPHANIE VAUGHAN, HOST: Welcome to Episode 4 of Speaking of NEC—a free, audio podcast series about Necrotizing Enterocolitis. Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure. For more information about this podcast series or The Morgan Leary Vaughan Fund, visit our website at morgansfund.org. Hello, my name is Stephanie Vaughan. Welcome to the show. I’m the Co-founder and President of The Morgan Leary Vaughan Fund. Today, my guest will be Dr. Martin Lee, Vice President of Clinical Research and Development at Prolacta Bioscience, which “creates specialty formulations made from human milk for the nutritional needs of premature infants in neonatal intensive care units.” Last October (2014), while attending the annual Preemie Parent Summit in Phoenix, Arizona, I had the pleasure of meeting Prolacta’s Chief Executive Officer Scott Elster. During our conversation, I was invited on a tour of the company. A few weeks later, along with a group of representatives from various preemie organizations throughout the country, I flew out California to tour Prolacta’s human milk processing facility, and to learn more about the people and research behind the company. I was highly impressed by all aspects of Prolacta from the manufacturing plant itself to the rigorous testing their products undergo throughout their processing. Even more impressive to me is the fact that everyone that we met at Prolacta has a personal connection to prematurity. The CEO himself is the parent of twins born prematurely. And, I was shocked to learn that one of the key reasons the company was formed, and their products developed, was to reduce the incidence Necrotizing Enterocolitis. The company’s reason for existing is the prevention of NEC. And the research presented to us by Dr. Lee was stunning. So when we began producing this series, it was only fitting to invite Dr. Lee to share the benefits of an exclusive human milk diet to premature infants and the clinical research supporting its use. With that in mind, let me introduce my guest today. This is Dr. Martin Lee from Prolacta Bioscience. And I’m so glad you could be with me here today. How are you? MARTIN LEE, GUEST: Good. How are you doing Stephanie? STEPHANIE: Good, good. So in previous podcasts, we’ve talked to doctors that are attending neonatologists and researchers. So I would like to give you the opportunity to give a little bit of your background and how you got involved with research in NEC. DR. LEE: OK. Absolutely. Well, I spent probably most of my career doing clinical research with various types of pharmaceutical and biotech products. I started with a company you’ve probably heard of called Baxter approximately 35 years ago, and I spent a good number of years working with them. And how that’s relevant to our discussion today is I was working with their group that manufactures blood products, and obviously blood is a significant human fluid, has many of the same issues with regards to safety that we have with breast milk. And so I learned a lot about some of the testing that needs to be done, some of the safety factors that we need to consider. And then I would say about 15 years ago, I met someone who was talking about forming a company who basically wanted to bring breast milk and breast milk products to premature infants so that they would have the benefit of receiving 100% human milk diet, particularly the smallest of the small premature infants. So together we started the company Prolacta. And the whole idea of course in starting the company was to put it‚…I think the most important thing was to put it on a firm clinical scientific basis. And that meant doing really important well-designed clinical trials to evaluate the most important morbidities like NEC, in particular, and even mortality in premature infants, infants certainly that had a high risk of both of those consequences of prematurity. STEPHANIE: OK. Maybe not all of the people that will be listening fully understand…what is an exclusively human milk-based diet? Can you get into that a little bit? DR. LEE: Absolutely. So obviously we know‚…we meaning pretty much the world understands that the best thing a newborn baby can be fed is mother’s milk. And for term babies, that is obviously going to be sufficient. They’re born at the right time and usually at a sufficient weight and mother’s milk has all the good things in it that help the baby to grow, help their immune system to develop, help their organs to develop, importantly it helps their brain to grow at the right rate. But a premature baby by definition is born too soon. And we specialize‚…the work that we’ve done at Prolacta,…specializes in the infants that are born as much as 27 weeks or 12 weeks premature so 27 weeks since the time of gestation. When those babies are born, they have a lot of problems obviously because they’ve come out of the womb way too early. And one of the things that of course they are is way too small. The average baby that we’ve studied in our research trials is less than a thousand grams. That’s around two pounds. Now most people know that the average baby is 6-7-8 pounds. And so they’re born so small that what happens is that mother’s milk which of course comes in when the baby’s born‚…nature didn’t intend mother’s milk to be able to feed these type of babies. This is an unfortunate consequence of something that happened with the mother, something that‚…injury, genetics, whatever it is that would cause a baby to be born premature, the milk comes in, but it cannot feed that baby well enough. And what I mean by that is the baby needs to grow. He needs to grow a lot. The baby needs to have their immune system protected by the mom’s milk, and so on and so forth. So obviously we always talk about mother’s milk being the thing for a newborn baby. It’s not enough for these premature infants. So what they need is what we call a fortifier, something with a little extra kick to the baby. And there are fortifiers that have been on the market for a long time. They’re made by the formula companies. And naturally these fortifiers are made from cow’s milk. And cow’s milk is not the best thing for a premature infant. It may not be the best thing for babies in general, but besides the point, it’s certainly not the best thing for a premature infant. So when we’re talking about 100% or exclusive human milk diet, we’re talking about mom’s milk; we’re talking about a fortifier which is necessary for the baby to grow and to be protected from infection and so on and so forth. That comes from human milk. And what Prolacta did was develop the world’s first human-milk human milk fortifier. And in fact, it sounds like a mouthful because when we talk about human milk fortifier, general people realize or may not realize that that’s a cow’s milk-based fortifier. We make the one from human milk. So that’s what we mean by 100% diet. And then one other thing just to add to that, Stephanie, is sometimes mom’s milk doesn’t come in enough or the baby wants it or needs to eat more, get more milk, so then there’s donor milk involved too. And that’s another aspect of the 100% diet. And of course donor milk is coming from other moms, which again provides the additional nutrition that the baby needs. And there you have the entire spectrum of what we mean by 100% human milk diet. STEPHANIE: OK. Thank you. Yeah, I know that there’s probably a bit of confusion amongst parents new to the NICU that human milk fortifier is a fortifier put into human milk, and not necessarily made with human milk. So I know that that does tend to cause a little confusion. DR. LEE: Right. STEPHANIE: So thank you for clarifying that. DR. LEE: Sure. STEPHANIE: So I guess I’ll ask you to go into a little bit of the research because I find it fascinating. As you know, we were out to your facility in November and I thought that this is a fabulous company. I was not aware of it when our babies were in the NICU and I will just make a tiny note that I know you’ve got significant statistics showing the benefit of human milk and exclusive human milk. Unfortunately for Morgan, he fell in to that other small percentage that I did pump. But he developed NEC so rapidly at four days old being born at 28 weeks. At four days old he developed NEC and I don’t think he had two feedings. So there are babies that get it even when all attempts are made to have an exclusive human milk diet. DR. LEE: Sure. STEPHANIE: And I also know that my other son, Shaymus, his milk was fortified, and to be honest, I’m sure it probably wasn’t with an exclusive human milk fortifier. So just some things to sort of give everyone background. And again, that was, you know, four years ago, 2010-2011. DR. LEE: Sure. I hope…I assume they’re doing OK today, right? STEPHANIE: Yes, yes. Everybody’s doing very well today… DR. LEE: Excellent. Excellent. STEPHANIE: which I think is why I’m so personally‚…my personal opinion is that your products are wonderful and, you know, things being what they were then versus now, I would definitely advocate for 100% human milk diet and advocate for this if I was a parent in the NICU now. So I think it’s great to get this information out to people. DR. LEE: Sure. Absolutely. So your question concerned the type of studies we did. Well, as I said to begin our conversation, we recognized that the only way that people‚…the medical community, both neonatologists, nurses, lactation people‚…would appreciate and realize the importance of what 100% human milk diet does and helps as far as the baby is concerned is to do proper research. As I said earlier, my experience is in the pharmaceutical and biotech industries where doing formal randomized controlled all the kinds of bells and whistles that need to be done when you need to license a drug or a biologic for marketing in this country and other places in the world as well. That’s standard stuff. So when we set out to do these studies, we said what we’re doing here is just as important, just as the need for rigor has to be here as it would be in any other kind of situation where you’re testing a new medical intervention. And that’s what this is. So we decided right off the bat we would get together the best of the best as far as the neonatologists in this country are concerned, and we brought them together and we set up a protocol. And basically the protocol was based on a very simple premise. It is 100% human milk diet better than feeding a baby mom’s milk fortifying then with standard human milk fortifier and then if all else fails or at least maybe not be sufficient than using formula. That’s standard practice for premature infants in this country. It was in 2007 when we started this trial and to a large extent it still is today. So it’s 100% human milk diet standard of care which includes cow’s milk based fortifier and formula. Babies in this study were randomized which is‚…you know, it’s a fairly simple term, but just to make sure everybody understands what I mean by that, the decision when a parent agreed to have their baby be participating in the study which group they get into, the Prolacta or the 100% diet versus standard of care was essentially a coin flip, not literally of course, but that’s the basis. Now why do you do that? Because that’s the best way to design studies. It provides an unbiased approach to making the decision of treatment of nutritional treatment, taking it out of the hands of anybody and putting it in the hands of strictly chance. So you randomize babies. There was a sufficient number of babies in the first study we did. There was over 200 babies that were randomized and I think it was 12 centers around the country. And what we were looking for in this study was whether or not they develop NEC and that was the most significant endpoint of the study. There were other things that we looked at. We looked at how much parenteral nutrition they received. We looked at other things. We looked at sepsis. We looked at‚…which is essentially bacterial infection that circulates in the bloodstream. We looked at hospital days. We looked at days on a respirator/ventilator and so on and so forth. But the main endpoint in this study was Necrotizing Enterocolitis. Now, the babies, by the way, that we used in this study or the babies that constituted the population of the study were babies under 1250 grams (2 pounds 12 ounces) down to 500 grams (1 pound 1 ounce). Very simple reason for that. I think many of the people listening will know that there’s a classification of premature infancy called very low birth weight. And that’s babies under 1500 grams (3 pounds 4.91 ounces). But we said, you know, we want to get the babies that have the highest risk of NEC. So we didn’t use, if you will, the heaviest babies in that weight category because they have, it turns out, the lowest risk of NEC out of all very low birth weight babies. So we took away that 1250-gram group. We also didn’t go below 500 grams because unfortunately, babies born less than 500 grams which is really about a pound or less have unfortunately not a high chance of either succeeding in life really and survival or they have a lot of other problems that make it very difficult to evaluate then. So it was 500 to 1250. That’s basically, I think, the most important aspect. And like I said, they were randomized. We followed them for a period of 90 days, maximum 90 days. Babies could have gotten off the study earlier if they got on to mostly oral nutrition which of course hopefully babies all do because they start off with what’s called parenteral nutrition which means they get their feed essentially through intravenous feeding. They then transition off of that onto enteral feeding which is typically a tube that goes either through their nose or directly through their mouth into their stomach. And that’s called enteral feeding. And then they go to oral feeding. So babies who are on for 90 days or if they got to oral feeding sooner, then they were off the study. Very simply, just to summarize what constitutes a fairly complex study to manage, we found a magnificent reduction in Necrotizing Enterocolitis. The babies in the standard of care group had a NEC rate of about 16%. Or put simply, that one in every six babies develop NEC that got some sort of cow’s milk protein or cow’s milk diet. The babies who got 100% diet was less than 6%. That 16 to 6 is about 70% reduction, and that is phenomenal. We’ve had some of the really very famous neonatologists told us that they don’t see‚…you don’t see that kind of reduction with really any intervention that they’re used to seeing. You just don’t see that. You see incremental things. But now all of a sudden we cut NEC by 70% by doing this. And it even gets more impressive when you consider that the majority of babies or at least half the babies who develop NEC have to go on to have surgery. STEPHANIE: Right. DR. LEE: And that is a really serious consequence not only just from the fact that a premature infant has to go on to major surgery and they take out part of their digestive tract. But even worse, they have a reasonably high mortality rate. So in this study, the rate of NEC surgery of all those babies that were in the two groups, it was at 11% in the standard of care arm and only just over 1% in the Prolacta arm. We reduced the rate of NEC surgery by eight fold, I mean just an incredible difference. Virtually wiped out NEC surgery in this study. STEPHANIE: That’s amazing. DR. LEE: Yeah. I mean, we expected to see something really good. We didn’t expect‚…I guess you could say well we should have expected‚…but it was beyond our expectations, wildest dreams to show this kind of effect. Now a lot of people have looked at this data and said well that’s interesting, and maybe that’s real. But can you‚…you know, can you do it again? And the answer is yeah. We did it again because that first study that I just described, these were only babies who were getting‚… which are most babies‚… who were getting some breast milk from their mom. But there are a small cohort of‚… I don’t know quite what the percentage is in this country, but there’s a percentage of babies who don’t get any breast milk. There’s various reasons. Mom is sick. Mom’s not available. So on and so forth. So we also did a second study in which we only treated babies or fed babies who had to get their nutrition either one of two ways. Since breast milk wasn’t available, they got formula. Soon as they were able to get enteral feeding, in other words the tube feeding, they got formula. That’s one group. The 100% arm, same thing, except here, instead of getting mom’s milk, they got donor milk, and then they got the fortified. So it was a real stark comparison. Only human milk, only formula. And it was a very small study. It was only‚…that first study, I don’t know if I mentioned or made clear, that was a 200-baby study. Pretty big study. STEPHANIE: Yes. Um-hmm. DR LEE: This study was only 53 babies partly because it was very, very hard to find these babies. I mean, we would sign up a mom, they would agree to put their baby on, and then they realized gee, I really want to feed my baby. I really want to give them breast milk. And of course, that’s fine. That’s great. STEPHANIE: Right, right. DR LEE: But they can’t participate in the study. STEPHANIE: Right. DR LEE: So we had a hard time finding. But we eventually did it. Took us three years to find 53 babies, but we did, and you know what? We found the same significant difference, particularly in the surgical NEC. There were‚…in the control arm, there were 24 babies, and four of them had to go on to surgery for NEC. That’s one in six. So about 16%. In the Prolacta arm, in the 100% milk arm, nothing, no surgeries, nothing. One case in NEC overall, but no surgery. So that turned out to be wow. That’s the kicker. Two separate studies, two different classes of babies, breast milk, no breast milk, doesn’t matter. When you give a baby that’s born premature like this, this weight category, less than 1250 grams, and you feed them with only human milk, they’re going to do better. And it even turns out when you start putting all the data together an extra‚…I hate to call it a bonus‚…but an extra important key outcome was that mortality was reduced. Mortality fortunately in this baby population is pretty low. It’s about 8% overall because of the prematurity, of course. We reduced that to 2%. So a four-fold reduction in mortality. So now when you put it all together, what do you have? You have prevention of the major morbidity‚…that is NEC‚…of prematurity, and you prevent mortality. And how can you really ask for anything more from a nutritional approach to these really fragile infants. STEPHANIE: Right. Right. No, I totally agree. And as I said before, my personal opinion, you know, as the mother of a surgical NEC survivor, I would advocate for this if we had to do it again. It’s definitely phenomenal. DR. LEE: Yeah, it’s almost this kind of effect you would expect to see if this was a pharmaceutical breakthrough or some new wonder drug or some sort of biotechnologically-produced intervention. But all it is is feeding the babies properly. I mean it’s such a fundamentally sound, logical‚…this is what nature wanted these babies to get. STEPHANIE: Right, right. DR. LEE: Babies should get human milk, nothing else. STEPHANIE: Now you had mentioned previously the difference between donor milk and then your human milk nutritional products. Can you‚…when I hear conversations, I sort of always think it’s like comparing apples and oranges. You know, it’s almost two different things. So can you clarify what the difference is with donor milk and your products? DR. LEE: Well, again, I’m sorry to be maybe not entirely clear. We make a donor milk product. Essentially, all our products are made from donor milk, both the fortifier, of course, and we make a simple donor milk product that is formulated to have 20 calories per ounce which is what doctors and nurses and dieticians believe they’re giving the baby when they feed the baby either mom’s milk or milk from another person. So donor milk is essentially the equivalent of mom’s milk other than the fact, of course, it comes from another mom. But however‚…and in fact, the American Academy of Pediatrics has said the best thing for a baby is mom’s milk. But if mom’s milk is not available, then donor milk is good. STEPHANIE: Right. DR. LEE: But the problem, of course, and one of the I guess you could say‚…I’m trying to think of the right word. Bad things that people associate with donor milk is well it comes from somebody else, and how do I know that person is the right person to provide milk for my baby? And that’s one of the key things that we had at the center of what we did at Prolacta from the beginning, which was to have a safety profile that was beyond reproach. I mean, we do things as far as testing the moms, testing the milk, that nobody else who ever handles breast milk does pure and simple. I’ll give you some examples. One of the things that I thought of very early on is because, again, remember I told you I came from the blood industry and they test blood and they test donors obviously every which way you can think of. But there’s one additional problem that donors who provide milk have in a sense that blood donors don’t. When you take blood from a donor, you’re seeing the person and it’s blood coming out of their vein and it’s coming right into a bag and you know whose it is. But a milk donor, she donates at home, pumps at home, puts it into containers, and then sends it wherever the donor, the milk bank, might be. In our case, it’s here at Prolacta. They’ll send it to us, and here’s the problem. How do we know it’s that person’s milk? STEPHANIE: Right. DR. LEE: How do we know it’s the person who we screened and did all the blood testing on to start with, that it’s her milk. So we do something very, very unique. We actually have the mom provide a DNA sample, they do a little cheek swab, they put a little stick essentially in there, and scrape off a little tissue from inside their cheek, send it to us so we have a profile. Now she sends us her milk, and when she sends us her milk, we can actually match it up. And now we know it’s that safe mom’s milk, all right? Now you might ask what’s the point? I mean what self-respecting individual is going to send somebody else’s milk to you? And the answer is nobody, for the most part I can say almost universally, will do that intentionally. But there are mistakes. I mean one of the things we’ve seen is moms that are lactating, sometimes there’s a couple of women in a neighborhood, and they’re all doing the same thing. And somebody’s freezer will become full with milk, and they’ll say to their neighbor, “Can I put my milk in your freezer?” And they said, “Sure, no problem.” And she’s got her own milk in there. And then they go to ship milk and lo and behold, there’s somebody else’s in there. We love that‚…we love the moms, but we have to be sure that every mom that donates is a mom that’s free of all of the nasty things that could be in blood because those things could be in milk as well like AIDS and hepatitis and syphilis and all those kinds of things that we should be concerned about. Even as an adult you certainly want to get blood from someone like that. You certainly don’t want to give that to this fragile premature infant. STEPHANIE: Right, right. DR. LEE: So going back to your original question about what we do versus donor milk, that’s all one in the same, I think you could safely say. Everything is based on the concept of donors and the milk that they provide and the safety of that milk supply being tested from any way you can think of so that every product that’s made from human milk is as safe as possible based on all of the different protocols that are used. And that includes other things besides DNA testing. It includes drug testing; it includes testing for whether the mom smokes because they may tell you they don’t smoke, but we’ve seen that instance where there’s byproducts of nicotine in the milk, and that’s not good for a baby. So we do that kind of testing. It’s just a laundry list of things to make that as safe as possible. STEPHANIE: Right. And I guess‚…I’m sorry‚…I guess to clarify my original question, I was speaking specifically about your fortifiers versus human milk. If you could explain a little bit the difference of that‚…I mean this was a very good‚…I can’t think of the word‚…a very good deviation, but yeah. When I was saying apples and oranges, I meant donor milk versus fortifier. DR. LEE: OK. I’m sorry. STEPHANIE: No, that’s OK. DR. LEE: The fortifier essentially‚…if you want to keep it very simple, the fortifier is just very concentrated milk. STEPHANIE: OK. DR. LEE: So essentially, what you do to make the fortifier is you take milk, you filter it to get rid of a lot of the fluid so that you concentrate the protein, you concentrate some of the other important nutrients in there. And that way the baby can get extra, like we say, protein, extra other nutrients in a very, very small volume. So for example, in our typical fortifier which we call Prolact +4, if you add that to mother’s milk in a ratio 80% mother’s milk to 20% fortifier, assuming mother’s milk is about 20 calories per ounce, you’re going to add 4 additional calories for that baby in that small volume which is a lot. So then we can actually do even more than that. We can do a +6, six calories, we can do +8 and even +10. That kind of product is for the babies that are the most fluid restricted. They can get 30 calories per ounce in the same volume that milk that originally was 20 calories per ounce was. So that’s really important for those babies, for example, that have heart defects who can’t take in a lot of fluid or babies for whatever reason are fluid restricted. STEPHANIE: OK. Thank you. DR. LEE: Sure. STEPHANIE: Yeah, that was‚… I think it’s important for parents and family members that might be in the NICU to be able to have a conversation with their doctor and fully understand what’s being given to their baby and be able to ask the right questions. So would there be anything else that you would want to add if you were talking to a parent who’s got a baby in the NICU right now for them to be able to advocate best practices for their baby? DR. LEE: I think that the simple issue for a parent under these circumstances is to ask the doctor based on all of the evidence that’s out there, clinical evidence,…and that’s how doctors make decisions. We talk about evidence-based medicine. This is based on the best evidence that the doctor is aware of, what’s the best way to feed my baby? And having said that, you know, the evidence that we’ve discussed here today is for those smallest of the small. For a larger baby, this is not necessarily‚…it’s not that it’s wrong. It may not be necessary, but when you’re dealing with the smallest babies and the ones that are struggling to survive and grow and thrive and get to where you want all babies to get to, to childhood and so on, then you have to ask the doctor the question what is the best way that our baby can get out of that NICU, that Neonatal Intensive Care Unit, and get home and be with his or her parents. That’s really, I think, the fundamental question. And the doctors should be able to answer that question based on the evidence that exists for the diet that the baby should be fed. STEPHANIE: Right. Thank you. Yeah, I think this is a really great conversation for any parent in the NICU, especially those, like you said, the smallest that are at the highest risk for developing NEC and as you said, other issues as well. And it’s‚…it can only be a benefit in my opinion. DR. LEE: Absolutely. And just to add to that, they should also ask the question‚…because there are other sources of nutrition, and there are other places from which milk can be attained we know about, for instance, women sharing milk on the Internet, milk sharing sites. You’ve got to be extremely careful. You’ve got to ask the question not only what’s best for my baby from the point of view of effectiveness, but also what’s the safest for my baby. And you want to be sure that the source, where that milk is coming from, where those products are coming from, comes from a place where you can say everything possible based on modern technology has been done to protect that milk, protect the safety of that milk. And I think that’s really critical. I think there was a story the other day‚…I forget which show, where it came up in one newspaper or another‚…about‚…oh, I know what it was. It was an article that was published that basically looked at milk samples. They actually collected milk on one of these sharing sites, and they found a large percentage of them had nicotine in the milk, had other things, other bad things that you don’t want a baby to have in that milk. So you’ve really got to ask that question what’s the best? What’s the safest for my baby as well? STEPHANIE: Right. Right. And Prolacta has provided us some material, some reference materials for sharing. So I will say that we’re going to be posting those on our website and will have them in the show notes as well. And I really appreciate you taking the time to talk to me today. If there’s anything else at all that you would like to add, please feel free. DR. LEE: Well, I just want to thank you for the opportunity to let obviously the parents out there know that we’re here for one very, very simple reason. I mean I know it may sound kind of corny, but we said from the day we opened the doors at Prolacta that we’re here to save babies, and I think we’ve done our job in that regard. And we’ve proven that that’s the case. So I’m really‚…I’ve worked, as you heard me say, for 35 years doing clinical and medical research, and I’m very, very proud to say that this is, I think, my best story to tell out of all that long career. STEPHANIE: Right. And as I said, I was out in the facility, took the tour in November, and we were very impressed with your company. And like I said, if I had to do it all over again, I would certainly be asking these questions and in my opinion, I think this is a phenomenal company. And your rigor in testing and your facility are top notch. So thank you. LEE: Well, thank you. Thank you. I really appreciate that, and it means an awful lot to me and to obviously everybody that works at Prolacta. STEPHANIE: Right. So thank you for joining us. And hopefully we’ll talk again soon. LEE: Alright. Thanks so much, Steph. STEPHANIE: In closing, I’d like to share a few thoughts about today’s conversation with Dr. Lee. Recently, I’ve seen a lot written about the use of donor milk, human milk products, and the emerging breast milk industry. Often times, the opinions expressed about Prolacta are solely related to cost: the expensive of Prolacta’s products versus those coming from nonprofit donor milk banks. In my opinion, the cost of using Prolacta’s human milk-based human milk fortifier far outweighs the potential risks of not using it, and any discussion about cost needs to be framed within the context of total cost of care. As Dr. Lee mentioned, Prolacta’s human milk-based nutritional products are intended for extremely premature infants who weigh less than 1250 grams (2 pounds 12 ounces) at birth. My son Morgan weighed 2 pounds 5.5 ounces at birth; my son Shaymus weighed 2 pounds 7 ounces. Prolacta openly shares that the typical cost of using their human milk-based human milk fortifier for these babies is $10,000. That, however, is only a fraction of Morgan’s and Shaymus’ total cost of care. Each of whose exceeded $1 million. In actual numbers, the cost of an exclusive human milk diet using Prolacta’s human milk-based human milk fortifier would have been less than one percent of Morgan’s total cost of care, and less than one percent of Shaymus’ total cost of care. And while Morgan’s case shows that no current preventative strategy for NEC is 100% effective, research shows that access to, and the use of, an exclusive human milk diet significantly reduces the risk of NEC in the majority of extremely premature infants. Show your support for our smallest and most fragile babies, those who have the greatest risk for developing NEC. Show your support for continued research in NEC. And join our effort to raise awareness about, and funds for research in NEC by making a donation to Morgan’s Fund at morgansfund.org. If you’ve had a personal experience with NEC and would like to share your story, or have a question or topic that you’d like to hear addressed on our show, e-mail us at feedback@morgansfund.org. We’d love to hear from you! Additional resources: Prolacta Bioscience, Inc. What Is Necrotizing Enterocolitis? N.p.: Prolacta Bioscience, 2015. Print. Prolacta Bioscience, Inc. 100% Human Milk: The Best Nutrition. N.p.: Prolacta Bioscience, 2014. Print. Prolacta Bioscience, Inc. Nutrition for Premature Babies. N.p.: Prolacta Bioscience, 2014. Print. Prolacta Bioscience. Premature Babies: What to Expect. N.p.: Prolacta Bioscience, 2014. Print. Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. The opinions expressed in Speaking of NEC: Necrotizing Enterocolitis (the Podcast series) and by The Morgan Leary Vaughan Fund are published for educational and informational purposes only, and are not intended as a diagnosis, treatment or as a substitute for professional medical advice, diagnosis and treatment. Please consult a local physician or other health care professional for your specific health care and/or medical needs or concerns. The Podcast series does not endorse or recommend any commercial products, medical treatments, pharmaceuticals, brand names, processes, or services, or the use of any trade, firm, or corporation name is for the information and education of the viewing public, and the mention of any of the above on the Site does not constitute an endorsement, recommendation, or favoring by The Morgan Leary Vaughan Fund.

Stephanie shares how her son Morgan’s experience with Necrotizing Enterocolitis was the catalyst for not only founding The Morgan Leary Vaughan Fund but also developing and producing the Speaking of NEC: Necrotizing Enterocolitis series. Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. Welcome to Speaking of NEC: Necrotizing Enterocolitis—a free, audio podcast series about Necrotizing Enterocolitis or NEC. Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure. For more information about this podcast series or The Morgan Leary Vaughan Fund, visit our website at www.morgansfund.org Hello, my name is Stephanie Vaughan. I’m the Co-founder and President of The Morgan Leary Vaughan Fund. Welcome to our show. As a prologue to this series, I would like share with you a little bit about Necrotizing Enterocolitis, and how my son Morgan’s experience with NEC led our family to found a public charity dedicated to NEC, and in turn, develop and produce Speaking of NEC as our charity’s cornerstone educational initiative. My twin sons Shaymus and Morgan were born on October 29, 2010 at 28 weeks, one day gestation—nearly three months early— each weighing less than 2.5 pounds. At 4 days old, Morgan had to be transferred to Yale-New Haven Children’s Hospital when the doctors at Bridgeport Hospital suspected that he had developed Necrotizing Enterocolitis or NEC, an inflammatory disease that leads to necrosis or death of the intestine. Shaymus remained at Bridgeport Hospital. NEC is predominately due to prematurity and its statistics are startling: NEC is the second leading cause of death in premature infants. NEC is the 10th leading cause of infant death overall. In the United States alone, NEC occurs in approximately 25,000 babies per year. All newborn infants born preterm (before 37 weeks of pregnancy) or born with a low birth weight (less than about 5.5 pounds) are at increased risk for NEC. The smaller the infant or the more premature the delivery, the greater the risk. For very low birth weight babies like Morgan, who weigh less than about 3 pounds, the chance of developing NEC is approximately 1 in 18, and Infants with the most serious form of NEC have a 1 in 4 chance of dying. (Sources: UC Davis Health System, CDC/NCHS, APSA and NICHD.) Recently, one of the doctors at Bridgeport Hospital described NEC to me as “an inflammatory response gone haywire.” Once at Yale, Morgan underwent emergency surgery. He had one perforation in his small intestine, and five smaller areas that were about to perforate. Approximately eight inches of his small intestine were resected or removed. For his age and size, that was equal to approximately 20% of his small intestine. Immediately after Morgan’s surgery, the surgeon came into the waiting room, sat down across from my husband and me, and began to explain how the surgery went and what we could expect for Morgan’s recovery. Morgan was “very sick,” sicker than the doctors had thought, but had tolerated the surgery well and the surgeon was optimistic about his recovery. In another 6–8 weeks, Morgan would need to have a second surgery to reconnect his intestine. One of the prerequisites for the anastomosis or reconnection surgery was for Morgan to weigh at least two kilograms (4 lbs., 6.5 oz). Morgan would need to double his birth weight before the surgeon would consider operating on him again. In the interim, he would have an ostomy pouch to collect eliminated stool and gas. We felt an overwhelming sense of relief when his surgeon performed a successful reconnection surgery. And we were thrilled to bring Morgan home to his brother on Valentine’s Day 2011—three weeks past his original due date. Before coming home, Shaymus spent 85 days in the Newborn Intensive Care Unit at Bridgeport Hospital; Morgan spent a combined 109 days in the Newborn Intensive Care Unit at Bridgeport Hospital and the Newborn Special Care Unit at Yale-New Haven Children’s Hospital. They are now happy, healthy four-year-olds. Because of Morgan’s and our experience, our family founded The Morgan Leary Vaughan Fund (Morgan’s Fund)—an all-volunteer, public charity dedicated to Necrotizing Enterocolitis. Our mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength. We know how lucky we are that Morgan not only survived but has also thrived since his bout with NEC, and this is our family’s way of paying it forward. The Morgan Leary Vaughan Fund was incorporated on Valentine’s Day 2012. It was a wonderful way to celebrate the first anniversary of Morgan's homecoming. On June 26, 2014, we reached our first major milestone when the IRS awarded us our 501(c)(3) tax-exempt status, officially making Morgan’s Fund the first public charity dedicated to Necrotizing Enterocolitis. In December 2014, we applied for a grant from The Petit Family Foundation in Plainville, Connecticut. The project for which we applied was our cornerstone educational initiative—a free, audio podcast series about NEC. In late January 2015, we were awarded the grant funding. And today, February 28, 2015— in honor of Rare Disease Day, we are launching Speaking of NEC. Immediately after Morgan’s diagnosis four years ago, we began to research NEC and its causes and outcomes. We had questions not only about his recovery, but also about what his future would hold after he came home. We quickly learned that, for as common as this dangerous and often fatal disease is in premature babies, there was very little information about NEC available online. Our search led to more questions than answers. And the questions that kept coming up were: Why don’t more people know about NEC? What is being done to prevent NEC? Who is doing research in NEC? And, where is that research being done? It is our hope that Speaking of NEC: Necrotizing Enterocolitis provides you with some answers to those critical questions. Morgan’s Fund through its support of research, and with your help, hopes to change the lives of thousands of very low birth weight babies like Morgan, who have the greatest risk for developing NEC. To learn more about Morgan’s Fund, or make a donation, visit our website at www.morgansfund.org/donate On behalf of all of the babies like Morgan, and families like ours, who have been directly affected by NEC, thank you for listening. To more information, contact us at www.morgansfund.org/itunes Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. The opinions expressed in Speaking of NEC: Necrotizing Enterocolitis (the Podcast series) and by The Morgan Leary Vaughan Fund are published for educational and informational purposes only, and are not intended as a diagnosis, treatment or as a substitute for professional medical advice, diagnosis and treatment. Please consult a local physician or other health care professional for your specific health care and/or medical needs or concerns. The Podcast series does not endorse or recommend any commercial products, medical treatments, pharmaceuticals, brand names, processes, or services, or the use of any trade, firm, or corporation name is for the information and education of the viewing public, and the mention of any of the above on the Site does not constitute an endorsement, recommendation, or favoring by The Morgan Leary Vaughan Fund.