Steven Coffee and Lisa Stewart

00:00 I'm Lisa Stewart. I'm 50 years old. Today is July 27th, 2016. We are in the Marriott Marquis hotel in Midtown Manhattan New York City New York and my relationship to the partners that I'm Angel stranger.

00:19 I'm Lieutenant Colonel Steven coffee coffee spelled like the drink only better. I'm 38 years old. Today is July 27th 2016 mall. So at the Marriott Marquis Midtown New York City and my relationship with stranger is Angel stranger.

00:44 It's nice to talk to you today. It is about your life before you were apparent. Wow, you know growing up in Nashville, Tennessee good Southern boy. It was a pretty pretty good. I'm all the way out of single parent mom. She was amazing and she produced me is an Air Force officer Lieutenant Colonel and my sister is a doctor. So I joke around and say she's a smart when I'm to Chris Matic one, but good. It was really good went to school at Morehouse College in Atlanta, Georgia and majored in political science was interesting before I even got to Morehouse. I ended up starting school in South Carolina at Voorhees College will small Episcopal School in South Carolina because my mom couldn't afford to send me the more house as a single parent and she just messaged her just started school. And so, you know, but by the grace of God I actually made

01:43 I remember telling them. Hay and I'm not going to go to Voorhees. I was such a bad like liar because they called me one day and said hey, we got your housing application. We were accepted you to go to school. Are you coming? I didn't know you guys may have been the first school to accept me, but my first choice School accepted me as well. So you can obviously be the first school to accept me and that my first choice would accept as well. But it was good. That was a great experience for me because it humbled me to be the only student at this little small school that had 900 students total to be there and invite I was determined to go to Morehouse and I ended up studying abroad and then transferring much to the dismay the people in South Carolina because they had this guy that they sent over to England to go study politics and he comes back and leaves their kind of upset but it was a it was a life-changing experience for me to go there and then to

02:43 Complete the goal of one of your house and I join the military to pay for college. It was a pay for college and it worked out pretty good. They pay for me to go to the Masters at George Washington University and legislative affairs. So I have this Miss Grand political idea in my head. So in your right now during the elections, this is like the Super Bowl for me for like 18 months, you know, but it was good and then as a as a single guy, you know, I

03:12 Church and Air Force officer and I thought it was like the top gun guys almost right?

03:17 Cool calm collected try to be a ladies man. And then I found a woman who saw through all of that stuff all that Persona and saw me and it's funny because I submit my wife at a wedding when I was living in Tampa, Florida. We both live there. We never knew each other. We had one friend Greg Coleman who actually got married in DC. My next assignment was to BC. So here I am at his wedding and Usher's kind of doing my thing and I see my wife and my cute but I'm moving to DC I'm single and she went back to Tampa. I went to DC and enjoyed my time there and ended up working at some really cool jobs for to the White House to President met the last five the last six presidents, maybe even 7 depending on the outcome of this current election.

04:10 And all the sudden I got reassigned back to Tampa if you think about military assignment, that's not a common place to get a sign to a really good spot twice went there left for years come back and I was getting set up on a blind date by one of my fraternity brothers and I go in to meet this lady who is not my wife.

04:34 And I saw my wife coming in and like she's cute but hadn't objected. I got to go meet this other lady and we didn't we didn't hit it off but in the same night, I kept looking at my wife and I think I know her and so I walk over to her and if she tells the story she said like I was stalking around the a little party, but the guy tell it it over to her just as smooth and as calm as I could be in said hey, I noticed you noticing me noticing you.

05:04 Ben solo that actually was the start of our relationship it was it was great. And I think it was really a godsend. And as I get into more kind of us being a married couple and the challenges we had with our son Steven. It really shows that she was the absolute godsend and right person for me so great being a single guy even better being married. That's good. That's good.

05:34 Were you planning on having children right away? Because we talked about having kids and we want to have children and my lights a little bit older than I am. So there was more of a need to probably do it a little bit sooner but I joke around I say Steven was, it was kinda newlyweds doing what newlyweds do and her call the time we kind of figured out when we think he was conceived and it was maybe a month or so after we've been married because I was pcsing inferred for non-military people pcsing means changing your your duty location. So nobody playing to intentionally be pregnant. I mean really pregnant in the middle of July and move your household for the first time. So remember she is not military at all. She works in banking and

06:33 It was my first time picking her up where she's been living for 10 years uprooting her and saying hey follow me to Hampton Virginia never been there before you follow me. I know you got a job, but come on come with me somebody plans to do that and be fully pregnant in July so we plan on it, but not not that soon but we're glad that it happened tell me about the pregnancy. So was actually pretty normal, you know, a little older she did have the newborn screening stuff in the prenatal stuff. So we did all those things and everything looked fine. There was no indication that something was wrong and we would know that too much much later, but it was normal Steven was born at 37 weeks and 6 days is almost full full term, but he was he was go there were no major complications. So we thought this is going to be normal. It's going to be easy and she asked for the siblings, you know, three more sisters and a brother.

07:33 But I have to get in the one sister. So we're like a pay week. We got this. We've got this we're going to be the new family in that. I had a position of the time that had 850 people working under me as an operations officer. So it was a lot of stuff going on. So we were lucky to have an easy smooth pregnancy, but it all changed when Steven was born. And so I'm a little bit about about that because she ended up having a c-section for for the birth because she has a placenta previa and you know, the doctor said, well, you know, that's let's just do this because you come in twice with some bleeding and let's just do this for the safety of the baby in for you like, okay, no problem, and I remember the day was born on September 28th. It was 11:28 a.m. September 28th, 2012.

08:28 And I left the hospital after I cut the umbilical cord was which was cool. But harder than I thought it was just like in the movies. It looks kind of like a quick snip bit. It's a little bit of the net but I remember going back to my office and the people in the office or like why are you here your wife just had a baby. And the reason why I went back was that I realized in that moment. I can't control this. I know what it means to be a military officer. I know what it means to do HR to do Personnel to lead people to deploy to environment. I don't know what it means to be a dad. I can even swallow the babies when she was kind of funny to figure out how do you do that? So I went back to the office and close out my computer and finally made it back to the hospital to be by my wife side with our new baby.

09:21 Yeah, and then when did things change wow so, you know there's their newborn screenings that they automatically do for all all babies and receiving he had his newborn screening. He was born at 6 pounds 1 oz so pretty decent way to be a technically preemie. What is glucose levels were really low and he little bit jaundiced babies come out jaundice all the time. No big deal. They immediately rushed him to the the NICU and like what kind of different but okay, they're doing whatever they do and what we found out later is that we've been about seven days in the Pediatric ICU.

10:08 And Nikki rather and we found out that he had maybe something a little different they couldn't quite pinpoint it. So the one thing I'll tell you is that when you look at the you know, the Affordable Care Act that we have for all the help here. It's kind of like centralized control with decent flexicution. So everybody around the country because of the score. Act has Healthcare but each state executes how that Healthcare is administered and how it's pushed out differently and the same thing actually occurs with newborn screenings. Everybody's required to do it, but how many tests require is different? So I talked to the doctor up in Boston Children's dr. Gerald Berry. He's the world's Authority on galactosemia, which is the condition that my son had and I think they believe if you got one genetic trait of galactosemia, we're going to stop you from being on milk, which one is soy product until we can verify in the state of Virginia if required three pause.

11:08 Steven didn't make it to the third test. So it changed then it changed when we found out that he are metabolic condition called galactosemia. And so, you know for the brother weird looks at you get like what's galactosemia is it like being lactose intolerant and like no, it's not like that the galactosemia the metabolic condition that your body can't break down the lactose found in human and animal milk. So you're missing this got one pee enzyme and the effects are generally commonly found in the liver and the eyes with form of cataracts and cognitive delays. And so first even he ended up having a liver transplant in 2012 because his body couldn't break down this this milk. So you say well if you knew that he had galactosemia. Why are you giving a milk?

12:05 And that's where they at the cashews we didn't know so they did identify the f135 gene that identifies galactosemia, but he had a negative mutated recessive gene something about a sentence you take one letter out of a word and you just move everything over the cynicism making sense anymore. So when his negative mutate a recessive gene, it had a 14 character deletion on that Gene which was probably a godsend because it allowed him to have milk for two months without dying. So with him we had that and then we found out that he needed a transplant and I'll never forget this day was November 28th 2012. We were sitting in Georgetown after Stephen has been admitted and we were in Hampton of the time they transfer us to Georgetown because of his liver and I didn't know why I thought he was just a little jaundice and if we put them under the photo lights will be able to get better and what I found out was one of the nurses were actually one of the residents who is doing the Morning Report said, this is Steven.

13:05 Or do so like you're going with this is Steven R two month old from an outside hospital with fulminant liver failure secondary to galactosemia. I'm like, oh my gosh. What are you telling me? Cuz we stayed in the hospital and he was listed a pretty high on the transplant list. And in fact got his transplant December 5th, 2012 sew two months old youngest in the country to have a transplant liver transplant surgeon Lee in 2012, and the only person was had galactosemia that's had a transplant because of galactosemia. So he is really on The Cutting Edge of medicine and there's a lot of doctors around the country that are following is progress to see is that a cure.

13:48 It's hard when you think about that because I've had parents come to me when I went to galactosemia conferences and said well we could get a transplant for our daughter our son and I say no.

14:00 You don't want to trade that this for that you don't have to worry about the immune suppression issues at my son going to have for the rest of his life and it's hard but he's doing a lot better 3 years old. He's potty training so that they got the cool part is that I get to be here doing this interview and just sharing his story. My my wife probably like a come back because he's potty training in you need to come take him to

14:28 So you're a military man. And you talk about being in control tell me about life when it's out of control while there's so many instances of it being out of control and it's uncomfortable. I think having a child first forces you to live and find order in chaos, because children really do change things their game changers having a special needs child really causes me to learn how to

15:02 Find a way when there is no way that's it was something like galactosemia because it's so rare and it's not a lot of people don't understand it and I work all going to Georgetown and

15:13 They know about metabolic conditions, but they weren't really equipped for it. So you talk about dietary needs, you know, it's easy when your child is a pediatric patient is 2 months old or 4 months old. All the drinking is soy milk is much more difficult when that milk has to be fortified with other stuff, but they don't carry the powder in the hospital. It's much more difficult when you start to figure out how do you feed a child that doesn't have milk that may be allergic to Soy because he has other allergies now that have come because he's give me a depressed cuz she's allergic to wheat, how do you feed a child and give him the proper nutrition and they've done a great job of helping us work through those challenges, but I've been really tough for me to not be able to control this situation for me not to be able to do as any husband and father would like to do is fix it. I want to fix what's wrong with my son and I can't so I Rely a lot of my faith.

16:11 To help me get through very tough times. I Rely a lot on getting back to other people participating in you know, conferences and organizations that are patient and family advisors and councils to give our experience cuz that's how I can control something that is uncontrollable.

16:32 Can you tell me about a day that you looked at Deuce you were really scared?

16:42 So there was a time back in.

16:45 2014 and he experienced a lot of cholangitis in Killeen dialysis where your biliary ducts are connected to your new liver. So you imagine a seven-year-old donor in a 8 week old baby talk about a miracle, but where you connect those two body to organ there's tightening that occurred because it was healing and so he experienced a lot of just repeated stents to try to open up that that blockage and let the bile flow clearly so that he couldn't, you know proper get better. So there's one time we were we were in the hospital and I'm so funny because we spent every single holiday Flag Day President's Day Valentine's Day St. Patrick's Day in the hospital when President Obama was inaugurated we watched it in the hospital.

17:36 But there's a time that he we've done all these stents and it was our thing because we didn't want him to go through another surgery and then surgeons came back his transplant team came back and said, you know, we've been doing stents for the last nine months. It's time that you guys really consider doing with caught up at achill jejunostomy, and I'm like a wet. Jejunostomy. We're going to go back and we're going to cut him back open again and go and kind of rewire the liver and so in my mind, I'm thinking my God my son. Just learn how to walk like 5 months ago and back you walked his first time walking was on Easter Sunday, and now you're going to go cut him in the same way you did and open them up again and I like yeah, we we need to do this and I was scared.

18:25 Because that was the first time that I really started to conceptualize the fact that I could have lost my son. So when the doctors transplant him the first time I never mind in my mind thought that he could I never thought that I had full faith. I was in the Lord but I have faith in the doctors never thought he could die. But after having gone through stent after stent after having gone through elevated number after elevated number in this drug is on 23 different drugs and medicines every day multiple times a day is down to 6 now. So that's progress but that instance of him being told that he's going to have to have a jejunostomy and understanding the procedure made me realized.

19:11 I could lose my son and I would not know what to do and I have no

19:18 Had no way Ford so you can cancel my wife so I can you go back to that role of a husband and a parent and other man. You want to be the person that's there to stand up and stand in the Gap and I was just as scared as she was and and it showed but it was a good thing because I had some some nurses and doctors that they really taking us in as as family at Georgetown not just a patient and they helped us get through very difficult moments. And so that was that was pretty tough time, but you made it for rent a place that

19:56 I think it's really hard when I think about where to place that wanted me to have a lot of experiences that would obviously at the top of the list there's some times that I've got pictures on my phone that I have. I keep of him right after transplant and it reminds me of the power of God power of prayer reminds me that there's hope in Hopeless situations reminds me that with a team effort that healing can take place and that's a special moment special thing.

20:33 Were you able to connect with other dads? Oh my gosh. Yes, you know I've because of the transplant experience the Earth at the doctors and nurses and clinicians. They ate a liking to me cuz I was pretty outspoken and they invited me to sit on this new group. They called ppac patient & Family advisory Council and they added two things when the end with q and ask for quality and safety and it's funny because we've only been in existence for two years and the first year we had so many things that we did. I got a chance to sit as the community chairperson in RP fac is made up of Associates and Community leaders in my community. I mean myself and other moms and dads and patience and it's a multidisciplinary group included in medical students in nursing students. Just a whole wide gamut of folks there because what we wanted to do was to have

21:29 The the patient's whispered. So it is a part of the ppac his kind of unofficial group. There's a lady that started this thing on Facebook called liver Mamas and is awesome. So when Steven had his transplant United, well, I'm a liver dad. So does that count? So we change the name now to be liver Mamas and families, but because of that respond off different Facebook groups and smaller groups, even at Georgetown specifically for transplant liver transplant pediatric liver transplant, and that's when the big thing to say is because there's a lot of places that do transplant but not allowed to do pediatric liver transplant. It's all very active with a lot of other dad and I think it's calming and reassuring for them to hear from someone that's been there and I remember talking to other people and they say all I know what you've been through and I think the worst thing I've ever heard when I went to work and I had a boss who was like, oh, yeah, you know it was in the hospital for like forty two days that time he's like, oh, yeah. I know what you're going through. My daughter was in the hospital for 3 days.

22:29 Pneumonia and I'm like, no, you don't know what I'm going through. You don't know what it's like to have your child woke up at 3 in the morning to get Labs 4 in the morning to take medicine. You don't know what it's like to have to give your child something every 12 hours on the hour to see their life and keep them living and she's not a fair comparison. What is nice when I has liver transplant dad can talk to other dads and say yeah. I know what you've been through it a couple families that are in the DC area that I talked with all the time and I think we're going to have to try to get together and have dinner or just lunch as Dad's because their challenges being dad and being translate dad and being husband and we can all commiserate together. So it's gonna be cool matter fact, one of the guys his son just turned to he's having a birthday party this Saturday and so it'd be nice to see three liver transplant dad.

23:29 The same birthday party and Stevens 3 his sons to the other kids turn to as well. So it's good. There's a lot of goodness that comes out of pain and tragedy and heartbreak.

23:44 How are you different?

23:48 On so many levels, you know, I have the commander of 560 people around the country. I call my my Airman with a capitalized officers and enlisted my kids and I say that's a damn with all affection because I now see command as really being a people business leadership is a people business in a lot of people in the in the military tell you that it's Mission first people always and I am the total opposite. I say people first mission always but take care of the people that take care of the mission have any experience with my son go through all of these been through his forced me to learn how to look at the people sign the human size of stories of people have cuz that's what we were that's what makes life. What is this experience as you go through? It's not what you have. You know, I think I've heard the adage let you know.

24:40 You make a Life by what you give not that what you get make a Life by what you give and so Steven is allowed me to give more of myself to be more transparent. I mean hikes I met her perfectly my angel stranger here to be this transparent with my angel stranger. That's a big change because guys are generally not as transparent with with feelings and emotions and he's changed me that way you change my family. I think one of the hardest things that my wife and I have had to do is learn how to be not only married, which that's the challenge in itself has been married for years the five years in December the cember 10th. I got it right honey, but not to be married to be a married couple but also be parents to also be parents with special-needs child.

25:34 A big change that's a big change. I'm different not only in a professional side not on the personal side, but I'm different as a person if another person because I've grown and I realize that

25:52 Change happens. It happens in the most unassuming ways. I've never thought that my son being born would change me to the extent that it has certainly wouldn't think that having a liver transplant. It really changed me. So it happened but I'm good with that. I'm comfortable now living in the great and I think that's probably the biggest thing. I'm comfortable living in the gray.

26:17 This huge

26:21 I

26:23 As we were talking earlier and I was sharing that we had a long time in NICU and in our situation.

26:33 My kid's dad, but look at the equipment the lights the beeping sound.

26:40 And if you could go through the machine to make them perfect, he would he would.

26:46 That sense of helplessness

26:49 I think it's so important for dads to have a place to talk with one another.

26:56 What do you see as it kind of your future vision of yourself in this space that's built on this deeply personal unique experience to say when I was growing up. I wanted to run for Congress which made sense military background undergrad and political science Master's list of fears.

27:22 Pedicles room for Comics. I think now I have a vision that I want to help people I could so see myself as a patient advocate in a full-time capacity somewhere. I don't think it's important. I think that as as the medical community grows having that other voice the customer voice and sometimes you know in medicine we don't think of customers and providers but we're customers, you know, providing a patient that family voice is important to me and I was doing a presentation earlier and I said, you know when crisis happens it never happened between 9 and 5 when the Metro where the subway is running like it supposed to always have like 10:11 to there's no bus, there's no cab that you can find quickly.

28:17 And then when you get to the emergency department, you got your cell phone cuz everybody keeps her cell phone, but it's probably dead or dying and the one thing they don't have in any emergency department a place to charge your cell phone.

28:29 The common sense approach

28:31 Two medicine. I want to provide that one provide those insights that sometimes get lost in all of the clinical words that gets lost in sometimes of sterile Miss of a hospital and I think it's important so

28:49 Where I am now living in the gray.

28:51 Things are not black and white as they used to be things are fluid. I've learned that mean in georgetown's had a lot of success and they've had some failures as well. But I think them being able to appreciate and recognize their shortcomings and make positive steps to improve on them makes the world of difference and I'm glad to be part of that and I want to be a part of that.

29:14 So there may be a day where do sco's to the library Congress and looks this up.

29:21 What would you like him to know about his experience early on while I pray for the day that he can go there and see that his story is archived for eternity. So the others can be inspired by his struggle. They can be inspired by strength.

29:47 I pray that when he goes and he sees it that he'll know that his dad was extremely proud of him that his dad his mom love him and that he's got a guy that can do everything but fail.

30:01 I pray that when my son grows old enough to be to go there and see this that

30:08 He'll make his own story that you want to do. I'm the same things that he'll want to be an advocate for folks that she'll do as much as you can until the least of them. Cuz that's one of the philosophies that Jesus taught it as much as you do unto them doing the least of them to do unto me in the same thing the same thing for me the same thing I want for him. I wanted to be proud. Most of all want him to know that I love him.

30:35 And how do you explain to him now? What what he's been through? What do you say is it's really hard but we when he pulls up his shirt because he's not ashamed of his scar and I want him to remember and remain unashamed that that's a Badge of Courage. That's a badge of Life as a scar of life and that you got a story behind this car and that someone thought it not robbery to give you a gift of life and he's protective life take your medicine when you're supposed to take it practice caution when you're supposed to call and have caution but experience life too. Cuz what that gif it's not just hold it like it's in a museum and don't touch it.

31:17 You have a new life a new chance new lease on life. So live life.

31:22 And I tell him that you got a lot of growing to do in a big world to see and you got a second chance at it. So don't waste it.

31:32 Is there anything else you want to share know? This is an amazing opportunity to have this thing called on a MP4 MP3 or deputies things, you know, I was going to get caught on wax, but I don't think we do records anymore. But story corpse is amazing amazing organization. And I appreciate them giving us a chance to meet. I don't think it was by accident that I could just run into you my Ranger Angel and have this kind of connection. That's why thank you first for doing this with me and letting me share the story. It's an important story and I know everyone has a story we've got some connections ourselves story and I really appreciate you for letting me do this.