Ep. 6: Joseph’s Story—An Expert Parent’s Perspective on Late-onset NEC and Short Bowel Syndrome

Laura Martin.

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.

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.

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