56: Jodie Lemacks – CHD Mom and Advocate Who Connects and Supports CHD Families Throughout The USA.

Jodi shares her story about her teenage son who was born with congenital heart disease.

Jodi shares her experience about when her son was first diagnosed with CHD.
She talks about the delivery and the first two heart surgeries.

Jodi talks about the overwhelming stress that she experienced leading up to her son's Fontan heart surgery.

Moreover, she talks about how her husband handled the stress of their son's Fontan surgery and how important it is for fathers to have their own support group.

Plus, Jodi talks about life after her son's Fontan surgery and how she realized that congenital heart disease for single ventricular children and their parents is a life long journey.

She also talks about the long-term quality of life for children after the Fontan surgery.

Moreover, Jodi discusses the importance of research for congenital heart disease and identifies specific trials that are being done by different organizations.

Finally, Jodi shares a valuable life lesson about CHD and how it affects parents.

Join us for this episode.

 

RESOURCES

Mended Little Heartshttp://www.mendedlittlehearts.org/

Pediatric Heart Networkhttp://www.pediatricheartnetwork.org

National Heart, Lung and Blood, Institutehttps://www.nhlbi.nih.gov/

 

Fontan Survivorship Clinic at CHOP- http://www.chop.edu/centers-programs/single-ventricle-survivorship-program

 

F.U.E.L. - Fontan Udenafil Exercise Longitudinal Assessment Trial- https://clinicaltrials.gov/ct2/show/NCT02741115

 

Congenital Heart Information Networkhttp://tchin.org/

 

Sisters By Heart -  http://www.sistersbyheart.org/

 

Children's Heart Foundationhttp://www.childrensheartfoundation.org/

 

Pediatric Congenitial Heart Associationhttp://conqueringchd.org/

 

Click The Link Below To Listen To The Walking With Families Podcast on Stitcher!

 

Podcast Transcript

Charles: So today on the podcast, we have Jodi Lemacks with us. And Jodi is a superstar in the CHD world and we're going to let her tell you all about her journey and how she has been involved with congenital heart disease and helping families. So we're so honored to have Jodi with us today. How are you? And thanks for being with us, Jodi.

Jodi: Thank you so much, Charles. I'm really honored to be here. I'm doing great. I'm really excited about all the awareness you're creating with this podcast. And, as you know, there's so many people who are still unaware of congenital heart disease and its impact on families, so I really appreciate all you're doing.

Charles: Well, thank you. Glad to be a part of it. So we're glad to have you on today. So let's just jump in, and you've got a son with congenital heart disease.

Jodi: Yes.

Charles: So let's talk about his journey and when you were first introduced to congenital heart disease yourself and let's just start there.

Jodi: Sure. So I was kind of minding my own business in 2003. I was pregnant with our third son. We're really healthy people. We have no history of heart disease in our family. So I went in to a routine 20-week ultrasound, and they told me, during that ultrasound, that there was something wrong with my baby's heart. At that point, I felt like I had been socked in the stomach and they wanted to send us right away to a fetal cardiologist. And so we were whisked away to a fetal cardiologist. We had an appointment right after that. I was really grateful for that because a lot of families that I know now in working with Mended Little Hearts have to wait to get information about their child.

So we were sent to a fetal cardiologist, and anyone who's been through that experience knows you go in, you lay on the table, and you try to get the baby to move.  They try to get pictures of the baby's heart through your stomach, and we were there for quite a bit of time with the fetal echo.  And my mom was with me, luckily, and we were put into a room, a conference room. And the next thing we knew, the cardiologist who was really sweet comes in with a box of tissues. And you know when they come in with a box of tissues, the news is not going to be good news.

So she proceeded to inform us that our son had a combination of heart defects. They were both very rare. One was a single ventricle physiology. I found out recently, it was actually double outlet right ventricle. And the other one was the intact atrial septum. The second defect made his first defect much more severe. Babies typically don't survive with that combination of defects. I found out later that it was a like a 1 in 20 chance of survival for him.

So needless to say, the floor dropped out from under us. And that's when we first found out about Joshua's heart. Instantly, I searched like crazy for someone to talk to about that situation. And there was no support group in Richmond, Virginia at the time. There was no one to talk to. I called around the the American Heart Association and to Mended Hearts, but didn't find anything. And then we started to research hospitals at that point as well. So that's where our journey began with congenital heart disease.

Charles: So the next step of all of this was your pregnancy, and leading up to the birth. Talk about that aspect of it.

Jodi: People say...there are differences of opinion of whether it's better to find out before birth or after. Personally, I'm really grateful we found out before birth, but it did make the rest of my pregnancy pretty miserable. I had a lot of anxiety, intense anxiety. And, of course, you're pregnant, you can't really take anything or do much. You just try to be present and in the moment, but it's very difficult to be. I really thought at that point, I didn't understand congenital heart disease And I thought that he would either die at surgery, during surgery or right after surgery, or he would have the routine recovery and we would go home and he would be okay.

And I didn't realize there was any possibility of in between on that. But what we did do was started researching children's hospitals. And at that time, this has been 2003, really the best option for us was to go up to Children's Hospital of Philadelphia because Dr. Thomas Spray specializes in single ventricle physiology. And we felt like we were going to give it the best shot we could. And so we researched all the hospitals and we went up there. I went up there with my kids, my two older kids, who were then seven and five, a few weeks before delivery. And we stayed with relatives up there because I was really scared of delivering at home in Richmond, and having to get flighted up there.

So we delivered in Philadelphia in the hospital next door to CHOP, and he was taken immediately. I never saw him. He was C-sectioned because they felt like with his condition they needed to have the OR ready.  And he was whisked away. I never saw him. No one ever held him up, showed him to me or anything, and that haunts me to this day. So I never saw him the day he was born. He was taken right to surgery and had his Norwood surgery day one and it was pretty rocky. He was in a pretty rough shape.

So by the time I saw him... I kept trying to get up during the night. I was next door. They have tunnels underneath. They'll take you to your child. And I kept trying to get up and go, but I would get sick because I had all that anesthesia and stuff from the C-section. So I was not in a good shape, but I was desperate to get over there. And I didn't manage to get over there until the next morning. And when I went next door, they wheeled me up. They had to take me in the wheelchair. They wheeled me up to Joshua and I looked at him and I thought, "Where is my baby?" Because he was covered with tubes and wires. Charles, you've seen this and any parent who sees this is like it's so horrifically overwhelming.

He was covered in every wire and tube. He had a breathing tube in. His chest incision was there. It was closed, but it was very visible and I really…had trouble like saying, "This is my baby?" I felt like...I mean I had never seen him without that. And, luckily, my parents took a picture, but it was quite something to do that.

So following along that journey he was very sick. He got a yeast sepsis and a bacterial sepsis. At this point, we realized it's gonna be a long stay in the hospital. And so we had originally not gone to the Ronald McDonald's House. At this point, we moved over to the Ronald McDonald House, realizing we're in there for the long haul. And he got to the point where they kept trying to extubate him, get rid of the breathing tube and they couldn't do it because he was so sick. And they're calling down to the CDC in Atlanta to try to find something that could help this child.

At one point, a cardiologist says, "No baby has ever survived with a yeast sepsis and a BT shunt." So that was a little daunting. And for some reason, at about five and a half weeks in, we don't know why, he just decided he was gonna survive. And I don't know why some kids make it and some kids don't, but that's what Joshua decided was his course. And so he turned a corner and within the next two weeks, we were sent home out of the hospital.

When we were sent home, however, there's a pretty high interstage for single ventricle HLHS-DORV. There's a pretty high interstage mortality. So we were sent home and scared witless. I remember the first night home, Joshua was on an NG tube, a feeding tube, and I woke up in the middle of the night and started screaming for the nurse. I was screaming, "Nurse! Nurse! We need a nurse!" And we were at home. That was a quite a shock.

Rita: She didn't show up, did she, or he?

Jodi: No, she didn't show up. The alarm was going off on the feeding tube. We have this pump by the bed. We had Joshua in the room with us. He had his little bassinet in there and no one showed up. And that was when it first hit me, "Oh, my gosh. I'm on my own here. What am I doing? Like, I'm not ready for this." So needless to say, we did try to figure out how to manage. But I'll tell you, it was one of the scariest times in my life and we knew we had a child who's very fragile medically. We didn't let anyone in our house. People very rarely could come to our house, and when they did, if they had...even being around someone, we made them put a mask on because we were just weren't taking any chances at all with him.

And so that lasted until his Glenn. And so that was in December. He had his first surgery. He was born on June 18th, and he had his Glenn on December 2nd, 2003.

Charles: Did you have any other kids, Jodi, at this point?

Jodi: Yes, so that was a challenge...

Rita: That was going to be my question because I think this was your third child.

Jodi: Third child, yeah.

Rita: So what about the two older ones when you were in Philly, and then now when you've got him home?

Jodi: Yeah. So really, that is one of the huge things and it's why we talk a lot in Mended Little Hearts about siblings because my two sons at the time they were seven and five. Oh, my gosh. So we had them up with us in Philadelphia for the first month. And luckily...thank goodness, I have relatives - I have tons of relatives. My mom, at that point, my dad, my stepmom, my sisters, my brother, they were all like taking the kids, helping us with the kids. And they also, in Philadelphia, the child life specialists -, I mean God bless them, they were phenomenal. They would take the kids. They would have classes. They would have crafts. They'd made all these things with them.

And so were really able to be with Joshua. But, at the same time, it felt horrible. It felt like here are my poor two other kids. My middle son had just been through a critical, almost fatal health issue himself, and they were just thrown out. We didn't have the space to really take care of them and help them the way they needed, and at the same time be with Joshua. So it was really awful for them. But they were glad to be with us. So at some point, we figured we needed to send them home.

So we sent them home with relatives, and that did not go great because they really did not like being away from us. And so we brought them back up. So they came up and down with relatives. It was really, really hard because I felt so guilty. I felt so guilty how it's had impacted their lives.

In fact, my middle son who's very wise, way wiser than his years. When we got back after the Fontan, we were at a restaurant locally, and he said, "Finally, we have our lives back." And I thought, "Oh, my gosh. These poor kids." And my oldest son, who kind the protector, he's the one who wants to take care of everyone. He's really so sweet. He tried to be there for Joshua. He wanted to help him. He was encouraging him to heal, to get better. They were really scared, as we all were.

And so when we went back up for the second surgery, the Glenn surgery, my mom said: "I'll take the older boys and you guys go," because it's just really hard to be in the hospital with the other kids. And miracles happened during that Glenn surgery that no one anticipated. We were home in five days and we didn't tell anyone. We drove home in the day and we got home by like a little after dinner time. We walked in the door, and it makes me tear up to even think about it.

My oldest one just broke down, broke down and crying. And I thought I am never going to do this to him again. He's coming with us next time for the Fontan. I mean he was so scared and we were gone and he had no one telling him. He couldn't see Joshua. Nothing. And at that time, we didn't have FaceTime and all these things. So with the Fontan, we brought them back up again and it was much better for them to be there with us. And we were able to schedule that in the summer so they weren't missing a lot of school.

Rita: So take us back to the point in time when you came back from the Glenn, and what at that time at home was like, and then getting ready for the Fontan.

Jodi: So when you get back home from the Glenn, if all goes well, it's such a relief. Like it's all of the sudden.  Joshua had not rolled over by this time. He was almost six months old and he had not done any of the normal baby things. And so we were concerned about that. But at the same time, we didn't know really what to expect. And the Glenn for kids with the single ventricle is actually a really relieving procedure. It takes a lot of pressure off; the BT shunt starts it. There's a lot of pressure going on there. And when you do the Glenn, it's really nice on the heart for the kids.

And what we saw with Joshua was just amazing. Like, once we he got through the Glenn, and this was the funny thing with Joshua after the Glenn, there was a line. They hooked all the top blood vessels up, going directly into the lungs through the pulmonary arteries. And so he had a line on his chest where the top half of him was really pink, and bottom half of him was not. We were like, "This is really interesting." And that eventually goes away, you know, as their system settle in. But the other thing is he did have a pretty headache. They call them "hemi-headache." So I don't know. I think that's pretty typical with a Glenn, but he really thrived.

The next thing we knew, he's rolling over. He still is behind the other two boys on every developmental milestone. He had kind of major speech issues as well. But he really started rolling over, sitting up, doing all the things. And you're thinking, "Oh, my gosh, we might live a normal life." Until you get closer to Fontan. At which time, he didn't have his Fontan until he was three.

But when you get closer to that Fontan, the feeling of dread (grows). I remember thinking, "If I can just get in my car, put him in there and drive as far away as possible." How can I get away from this? And it's very irrational. I know that sounds crazy, but I was thinking how can we not do this? How can we avoid this? I need to get away from this. And we just need not to do this Fontan. And I had looked up a lot of research on the Fontan. And at the same time, I’m on an online support group and seven kids passed away after the Fontan at that summer.

And so I'm thinking, "I'm not doing this." And then at the same time, Joshua's surgeon, Dr. Spray - who is our hero and has saved him twice - he was out the whole month of July for back surgery and we were his first case back on. And I'm thinking, "Oh, my gosh. I'm scared half to death." And we got bumped a week, too, which happens. That happens. He needed another week. I mean my anxiety during that time was over the top. I was just terrified and really having trouble coping going into that Fontan.

So you have a period of okay, and you're great, and you're like, "Oh, I may be a normal family," and then you head into that Fontan and you think...

Rita: Like being sucker punched.

Jodi: Yeah, yeah. It's like when it's scheduled, your life just goes (crazy). I can't even describe it, but it's one of the worst feelings ever because now you have an older child, who you've really (grown attached to). I'm not saying, if we had lost Joshua at infancy, it would have been any easier at all, because it would have been horrible. But now you have a older child that you've grown attached to, that you've learned to love and you've just had this life with this kid, and you're thinking, "I'm not going to take my kid to this surgery." And it was just very, very difficult for us  going into it. And actually coming out of it was equally difficult. It was a huge wake-up call for me in terms of what the rest of our lives would look like.

Charles: Jodi, how far out were you when you started experiencing the stress? How far away was the surgery when you started...

Jodi: When we decided to schedule it would have been in...he had the Fontan in August of 2006. I believe we scheduled it in March. So we had an appointment. It was either February or March, and we set the date at the time. And from then on, like from then until August, was just miserable. And I don't know...I can't tell you how I got through that time because I felt like I wasn't going to make it through that time. But I just took it one day at a time, that's all I could do, and I just had to give up my control, and trust whatever is gonna happen is gonna happen. I can't control it. And once I did that, I started to feel a little better, but it was just really terrible.

Rita: Did your husband have the same experience?

Jodi: I would say...it's so hard to tell because I think he kept everything deep down. Like, I think he was not very expressive emotionally. I mean, when Joshua had the Norwood, when he had his first surgery, he didn't leave his side. He stayed by him. I had a C-section, so we had to switch off times we could be there. You weren't allowed to go to sleep in the quad, so you had to sit in this rocking chair. He literally sat there and got books all night and read all night and didn't leave his side. And I do feel like that's one of the reasons Joshua did better than he was anticipated to do. But at the same time, he didn't really express emotion about it.

I know how scared he was and I know how terrified. He's really internal. And so you couldn't really tell. When we were with Mended Little Hearts, in our group, they had a dads group. And I remember I'll never forget, one of the dads saying, “You know, I was supposed to protect my child from this. And I'm the dad. I'm supposed to do that." And we all started crying. I mean all of us, including my husband.  And I think that sometimes really internally. Women are allowed to express all these emotions. I mean mostly in Mended Little Hearts it's moms in the support groups. But I think it's a huge disservice to dads because I don't think they feel like they can express the feelings at the same level that the women can - the moms can.

Rita: One of the things that we noticed here at the House, which is an interesting side light, is that we used to be staffed very differently. There used to be a resident manager who would keep the office open until about 9:30, and then she would retire to a basement apartment here at the House. She was available if families needed something, and she would sort of triage phone calls that would come in overnight.

We changed that to 24-hour a day wake staffing, so there's always someone manning the office and awake. And what I never anticipated, in discussing with the board why we needed extra funds to do this and how it would help and whatever, I never realized that perhaps the most compelling reason was it provided someone for the dads to talk to. Because during the day the moms would sit and chat with one another and would find outlets, and the dads didn't. And it was during that overnight time when mom might be resting or even might be at the hospital that they would let down enough to talk to someone. And it provided the most compelling reasons for staffing in that way.

Jodi: Yeah, and I think the worst hours are, honestly, in the middle of the night. I mean I remember...like in the day, people will come by, especially a week day, in the hospital. I remember the genetic counselor who saved my sanity at CHOP during the Norwood and, again, she was there during the Fontan. And she would come every weekday and we would talk - even if it was just talking to her for half an hour. I felt like it was something that I could just talk to someone and it was huge. It meant the world to me.

And sometimes, Mark would see her. But then at night or on the weekends you have no one. You're just there and when he was there overnight he just was there sitting by Joshua's bedside. I mean Joshua had a breathing tube, he was in the incubator, and there was nothing to do but sit there and hope that he would be okay. But he really did need that. I think having people around him or staying up in the hospital all night was his way of connecting. And it really is important to have someone that the dads can talk to.

Charles: So you mentioned after the Fontan, you didn't know quite what you were getting into. Talk about that.

Jodi: Well, when you have a kid with a single ventricle anomaly like Joshua - at the time, and they may not still do this, I don't know - they keep telling you, "Well, if they make it through the Glenn, the chances are they're gonna be okay. And then they have to make it through the Fontan."  You’re thinking you make it through these three surgeries and you're home. And so that's what I believed. I thought, "We just need to make it through the Fontan and we'll be great. And then we'll have a normal life."

And as we all know, if you make it through the Glenn, and the success rates are pretty high for that, there's still significant mortality with the Fontan, If you make it though that, then what you find out in a crushing blow is, oh my gosh, this is not done. It's the rest of my life and he has anatomy, and I've learned recently it puts a child in heart failure. So his anatomy is never normal. We're never going to be free and clear. We can never say, "We've had this repair and now we're great. And we're going to be great until old age." You can't say that, and that hit me like a ton of bricks.

And I'll tell you, I went into a pretty severe depression after the Fontan because I just kept thinking, "If we make it through this, we'll be good, and our lives will be like normal people." And I realized that's not the case. It hit me, its lifelong care. And it's not that I wasn't very, very grateful, but it just hit me so hard that Joshua can't live a normal life. He is a happy, great kid. There is no doubt I had so much to be grateful for. But when the notice comes from school that everyone's doing this, they're gonna run a marathon and over a course of time, and Joshua is so excited, and wants to participate, but really he can't do that as much as the other kids.  Like for him, the running is much harder.

It is hitting me about the limitation.  This is a kid who loves sports, absolutely loves sports, wanted to play football, tried soccer, really couldn't manage it. Has been playing basketball.  Recently, the coach talked to me and he wants to keep him down an age level because he just can't quite keep up. And these seem like minor things, and I know they are, but we never live a normal life. We never live without fear. He has liver issues now and we watch what happens to other kids, and we have had too many losses. And it's just a constant lifetime of that. Well, at the same time there is intense gratitude…there is intense fear.

Charles: So, Jodi, with your work with Mended Little Hearts, have you seen any statistics on the fatality rate after the Fontan and what these numbers are?

Jodi: Yeah, I think the surgical rates for the Fontan are pretty good. I think they're up in the high 90s. I believe it's about 98% through the Fontan. And if you look at the long term, there are a bunch of statistics on the Fontan over time. Their survival rate is good, it's not great. It's just not where we want it to be. And in fact, the Fontan has changed a little bit. Now they have what's called the extra cardiac Fontan, where they used to have only a lateral tunnel Fontan. And I don't know that they're seeing much difference, maybe some in the arrhythmias, but the Fontan has hardly changed.

And so we're creating an anatomy that lends itself to failing at some point in the child's life, maybe early adulthood, late teens. The need for transplant is not insignificant in the Fontan patients. The liver issues are not insignificant in the Fontan patients. In fact, most of them have some degree of liver damage. Joshua has liver damage. And so while the initial survival after the Fontan surgery, I think it's pretty high. I believe it's 98%, Charles. It's pretty high at the surgery, and I don't know how many days out of surgery that accounts for, but that's the surgical statistic.

The life with the Fontan has different statistics to it, and there have been a lot through the Pediatric Heart Network and through the National Heart, Lung & Blood Institute. The NHLBI, has recently studied this in some detail. They have gotten a lot of data on that.

Charles: So as far as how this is affecting Joshua's liver, and some of the challenges that you're having with that?
 
Jodi: He had a liver biopsy. So the first time we were back with the procedure was last year. We went up for a cardiac catheterization and a liver biopsy because of ultrasound.  He's part of the Fontan survivorship clinic at CHOP, which is the multidisciplinary clinic, so they have cardiology, gastroenterology, endocrinology, hepatology. I know I'm forgetting some. They look at all of the issues. They do blood work. They do a lot of testing and they look at the child and all these factors. When they did that, they saw that it looks like there's some fibrosis of the liver and his numbers indicated that.

So we went up for a liver biopsy and a cardiac cath. That was a different issue to take an adolescent out there and certainly, there was a lot of fear. He had a lot of fear. I had a lot of fear. But I had to be strong for him and make sure that I didn't show it. And he did okay, fine through that. But then when we got the results back. I was really surprised actually because he seems to be doing very well. If you look at him, he's healthier than a horse. I'm knocking on wood as I say that. And he does really well. He doesn't seem to be having any issues.

When we got the liver results back, he has more than average liver disease. So he has fibrosis of the liver, and that is something I don't understand that as much as I probably should. I don't think it's reversible, but I think our goal is to try to prevent further damage. They put him on a diuretic, and Aldactone or Spironolactone. And that's supposed to help with that, and then we also entered the FUEL clinical trial. Joshua and I talked about it for a long time, and there is a medicine, Udenafil, that may or may not (help), but that's not what the trial is about.

The trial is about exercise, improvement and exercise. But I felt it may help with the liver, as well, so we entered that trial.  And that's a really good trial actually. I would highly recommend it for people because you get the medication for a year. There's an open trial and you get the medication for a year at the end of the closed trial, where you don't know what you're getting. And it looks to me like this medication can be very beneficial to kids with CHD single ventricle liver issues.

So that's what we're doing to address it, but it's one of those things that kind of hangs over your head. You think, "Well, I don't give him Tylenol  anymore." And I don't know if that matters or it doesn't matter, but you feel like you're not touching another Tylenol. I'm really careful what he eats and we try to keep him exercising and walking, but it's scary. Like, it's scary to think about this because liver disease is certainly a sign of the heart failure and that's hard to deal with emotionally for all of us.

Charles: This FUEL trial, this clinical trial. You said, it's, F-U-E-L? Is that what it is?

Jodi: Yes, it's Fontan Udenafil...I should know it because we promote it a lot. We helped them develop the one-pager at Mended Little Hearts, and I love the trial. I think it has run so well. We've been involved in other things, studies, and stuff. And this one really is really great, the way they're running it, but it's FUEL. I don't know what the acronym stands for, but it is F-U-E-L.

Charles: So if somebody wants to get involved with it, how will they do that, Jodi?

Jodi: There are a bunch of centers that are doing the FUEL trial, and it's really easy to find them. The Pediatric Heart Network has a link to them. If you Google "FUEL Trial," F-U-E-L. Udenafil is, U-D-E-N-A-F-I-L. I think if you Google any of that, you can find the trial. There are a bunch of centers that are doing the trials in their centers. CHOP is one of them and we happen to go there, so that's where we're doing it. But there are a bunch of other hospitals that are doing it as well.

Charles: So it's a national study, not just a local study at CHOP?

Jodi: Yes. Yes, it's a multi-institutional study, which is another thing that's really great about it. I think it's going to give us a lot of great data and I'm excited about it. Again, I also think the primary investigators and the people running it have been just amazing. They're really thoughtful in their approach. They got the parents involved, Mended Little Hearts, PCHA, Sisters by Heart, they got us all involved in creating the messaging to parents. And Mended Little Hearts did a webinar on it. That webinar is available for viewing. And I think the Pediatric Heart Network has a link to that webinar.

And they got us all involved in this so we could help inform them about what parents would accept and what they wouldn't accept. I think that's really key to any clinical trial. I really was impressed by them in the way they handled this.

Charles: So your involvement with Mended Little Hearts, do you want to chat about that some, and talk about some of the things you're doing with them and how you got involved with them?

Jodi: Sure. When Joshua was diagnosed in 2003 in utero, as I said, I called around. I called the American Heart Association and they sent me to Mended Hearts. I talked to them and I just felt desperate. I mean I have a great family and friends. I have a good support system, but I needed to talk to someone who had been there and done that. I felt like I needed to see a kid with CHD.  What does this look like? What do I expect? It's the normal parent questions that you have. You can get medical information, and that's great. But at the end of the day, I think parents want to know what it's like to have a kid with this condition.

So I called the other places. I got hooked up with one mom. I talked to her a little bit. But there was no one. They said, "Well, there used to be a support group in Richmond and it went away. The people who were running it, that they just got tired and so it wasn't existing anymore." So I said okay. And then I joined some online support through the Congenital Heart Information Network, and that was great.  But it wasn't giving me what I needed in terms of person-to-person support.

So in 2005, this was a couple of years later, Mended Hearts called me and they remembered that I talked to them. Dr. Bill Moskowitz, who is an amazing interventionalist cardiologist here in Richmond, called me up and said, "Hey, would you be interested? There's this new program at Mended Hearts called "Mended Little Hearts." Would you be interested in starting a group here, a chapter here in Richmond?" And my first thought was, "Heck, no. I'm not because I have little kids. I have a kid with a serious illness. I just can't do it. I can't manage it."

And then my next thought was that if I don't, who's going to? And what are the parents who felt like me going to do when they're diagnosed? And so I said yes and we started Mended Little Hearts. It was at that point Richmond, now Central Virginia. And I had a lot of support from Mended Hearts. They were really wonderful to me. Every time I wanted to give up, they would say, "Jodi, you can do this. You can do this."

Dr. Moskowitz was amazing as well. And we started the chapter. It was chartered in November of 2005, and we were the 9th chapter in the nation which was pretty exciting. We have almost 80 chapters now. And I will never ever forget the first family who came in - the woman was pregnant with a child who was going to have tricuspid atresia, Hypoplastic Right Heart Syndrome, and she was about eight months pregnant - and the dad, and they had an older daughter.

And they came in very tentatively to a support group meeting and I remember their faces just, like terror on their faces. And she comes up to me, I welcomed her, I said, "I'm so glad you're here." And she said, "Which child is yours." And I pointed a child running circles around the room and instantly I saw the impact it had on their family, their faces, and their whole demeanor changed at that point. And I will never forget that image because that is to this day what keeps me doing what I do. And I knew how important it was for them to have that connection, and for so many people to have the connection with people who truly get what they're going through. They get it.

I asked a question on our local Facebook page about the heat the other day, and I have so many answers already. The amount of love and support that we give each other is just…you cannot replace that. It's so warm and it's so caring, and there's nothing like it.  And I knew that I wanted to keep doing that at that time. And then in 2007, two years later, they had someone who was working at Mended Hearts, like 10% of his time was given to the Mended Little Hearts program, and he was kind of running it and he left. And so they were looking for a staff person, and I thought, "Oh, good, we're going to get a staff person for Mended Little Hearts. This is going to be great."

And I watched them searching for it.  They kept putting out announcements that they're looking for this person. And they're in Dallas, so just so you know, they're in Dallas. And I thought, "Oh, this is going to be so great. We're going to have someone helping us."  I guess they put this out for almost two months, and then the next thing I know, they're saying, "We will take remote positions and remote applications." And so I thought, "Oh, that's great. That's great. Someone can do it remotely." And I'm still at this point thinking, okay, this is going to be wonderful, not even considering that it could be me. And at the same time, I'm an attorney. I call myself a recovering an attorney, which is just for fun. I actually loved practicing law, and I have a background in leadership training and development.

And I thought I needed to get back to work. I was teaching at the University of Richmond as an adjunct faculty member.  But I really needed to start getting back to doing something outside of the home that gives me meaning and purpose in my life. So I was asking for signs, as I often do. I'm like, "I need a sign of what I should be doing." So the next thing I know, another emails comes through, "We really are accepting remote applications for this position." And I thought, "Oh, what the heck? I'll apply."

So I applied for it.  They really liked my background, but then they said, "This is going to involve some travel." And I was like, "Oh, heck no." This is not for me because I was so afraid to leave Joshua. And so I said, "I'm not sure how I feel about that." And so they called me back, they said, "Are you saying you won't travel or that you just have reservations about it?" I said, "Well, I would but I'm having reservations." And it was probably actually the best thing I did because I learned to let go a little bit. So I accepted the position. It was part time at that point, coordinator for Mended Little Hearts national program.

And it was great. We had about 14, 15 chapters at that time. We kept growing rapidly every year. It's been so much fun. I did the work. First Annual Mended Little Hearts Leadership Training was in San Antonio, Texas, where we're going back to next year. It was so rewarding and so fun, and I got to help other people form chapters and give support, and  the leaders in Mended Little Hearts were amazing, amazing people. So, anyway, that's how I got started with Mended Little Hearts from a volunteer, and then a staff position.

Charles: Jodi, talk about this has changed from 8 or 9 chapters to 80 chapters.

Jodi: You know, it grew I think a lot more rapidly than anyone expected. I think Mended Hearts, when they started the program, thought, "Oh, isn't this nice? We'll form groups for families of kids." And it took off like a shot, and I think it was because there's such a need for that kind of support, and that need has really morphed. I mean as we're more on mind as a society lately, that need has really morphed, but we had so many requests.

I mean I would get a request probably at least once a week for someone who wanted to start a chapter in their area. Now, as you know, not everyone who thinks they want to start a chapter will follow through or is able to do that because we're pretty strict. We need to make sure the people who are leading our chapters are really supportive people, that they are people who want to grow a chapter and work as a team, that they can bring enough people together to start a chapter. So even though we had so many requests, we actually couldn't take most of them.

So I'd say in the beginning, we had 14 chapters a year formed, which was a lot when you're forming a chapter. It was a lot to manage. It was anywhere between 10 and 14, I think, each year. And I've been there 10 years now, so it has grown really nicely. And then as we moved on to social media, we do a lot more with that. We have a "Rock Your Scar" photo contest. It's our first thing to really build awareness of CHD. We have all sorts of different awareness initiatives, services, our Bravery Bag program, etc.. We kept expanding what we do to try to reach more people and give support.

"The Mended Little Heart Guide" is a digital resource. It's available in English and Spanish, and that has really created a bigger network that we can reach and say, "Hey, we're out here for you. We care about you."

Charles: Well, I think the work you're doing is pretty remarkable and I will echo your sentiments about the CHD community. I was talking to Christine the other day, and we both kind of said that none of us want to have our kids grow with this disease and experiencing this, but the community itself are some of the most open and generous people I think I've ever met. No doubt about it. So talk about research and money that's raised for congenital heart disease.

Jodi: So it's really important that there is research dedicated to congenital heart disease, and Mended Little Hearts is not a research organization that funds research itself, but we participate in a lot of research, projects, and studies. We give our voices to help define research priorities. We recently did that with the NHLBI because there are organizations already doing that. So you have Children's Heart Foundation. They are partnering with the American Heart Association. They fund CHD research only. They're an excellent organization. They give grants to a lot of the children's hospitals.

And like I said, they're working with American Heart Association, who is working on expanding their CHD research portfolio. They do a lot of funding of research on heart disease in general, but a lot of it applies to CHD. And that's wonderful. The Pediatric Heart Network is also (wonderful). The government is the biggest funder of CHD research there is and the Pediatric Heart Network does much research, and where possible, we work with them. There's also the NPQIC that Sisters By Heart is leading. That's an amazing collaborative, where they're studying interstage, and they're moving it out past interstage, HLHS, and they're trying to figure out how they can improve survival. And they're doing amazing work.

So Mended Little Hearts really supports and gets involved in a lot of these initiatives that other people are doing. We feel like it's vitally important at any research. Like Dr. Pearson, Gail Pearson, of the NHLBI, she asked us what our research priorities were as parents. And that's amazing. That's the first time we've ever been asked that, and I thought, "What a novel approach to coming at research," because you can research a lot of things about CHD, but at the end of the day, what do the parents want to know? What's going to have our kids have the health and the best survival that they can be more like normal kids. We asked that on the Mended Little Hearts' Facebook page, and I got, I don't know how many responses. I mean they were a zillion of them.

So I took those and I saw what the different things were. I put them into buckets, and I wrote them up for Dr. Pearson, and she actually presented them at a conference she was in. But those are the ways that Mended Little Hearts gets involved with the research, but I really feel like I'm going to plug Children's Heart Foundation because I feel like they're the organization that really funds CHD research the best.

I also feel like different hospitals - UVA in your area, VCU, Children's National up in DC, for us, CHOP - they are all funding really important research projects that parents can get involved in and help with. We don't pick a specific hospital as Mended Little Hearts because that's not appropriate for what we do. We're about emotional support, awareness, education and advocacy so we don't do that. But I would highly recommend that people do get involved and help their local hospital with its research projects.

Charles: So advice you would give to parents that are going through this, what would it be?

Jodi: My first impulse is to say just breathe. You can't control this. You can do what you can. You can educate yourself as much possible. Get connected. Get connected with people who want to support you and care about you and get you, that really understand it. Get connected, but then just breathe. The best you can do is take it - sometimes you have to take it - minute by minute. You can't look ahead. You can't look at the     “what ifs”. You have to stay in the present moment and just look at what you have now because all you have is what's right now. And if we fritter that away, then I think we'll regret it down the road.

It's easy to get caught up in the fear with this disease, but we can't. We can't do that. You just have to breathe and take it minute by minute, second by second, if you need to, day by day, and just really try to appreciate what is here now and not think about the future.

Rita: I guess as I'm sitting here, I'm wondering if you ever go back to UofR Law School and share your story?

Jodi: You know, it's really funny you ask that because I was still teaching in the law school. I taught first year law students after I had Joshua. And it was really interesting, the change, and what I said to them. I would say to them on the first day as I would look at them, I'd say, "When I was sitting where you are today, never in a million years did I believe I'd be where I am now." I told them I thought I was going to be practicing law. I was going to be doing litigation, and I thought my future was known to me. And then life happens and things change.

And so I tell them, "What I want you to be prepared for is that anything could happen. You may not use your law degree in traditional ways, but what I want you to understand is to make the most of this education and how important it is in anything you do because I use it all the time in Mended Little Hearts. You don't think I do because I'm not practicing law, but in terms of persuasive writing - I taught writing - doing research on issues, I do that all the time. I go to Congress. I worked on the pulsox screening, I worked on CPR in schools. I use my law degree all the time." And I say to them, "It may not be in the traditional sense you're thinking of, but you can use this degree and so really get the most of it."

So I did tell them that every year. That's how I would start my class for the semester.

Rita: I think it's an important, important message for everyone that life doesn't turn out often the way we think it would. My husband is an attorney and two or our children are both attorneys, and I just think that's a valuable message to give them when they have such an idealized vision of the law and how their lives are going to go after law school. It's a very valuable lesson.

Jodi: Yes, it is a valuable lesson. And you can use your experience, whatever your education is, whether it's law, marketing, any background, you can use it in different ways than you ever imagined. And it can be...well, maybe not as profitable. It can be just as rewarding. If not, more so. Because at the end of the day you feel like you're making a difference in people's lives. And every single email I get, every single call I get, where someone says, "Hey," - I mean they're in tears, they say - "Hey, I got a Bravery Bag four years ago, and I can't even tell you what it meant to me." That's is what it's about.

And you can be sitting there in law school, in whatever school, and you think you know what you're going to be doing. But your life can be so much more rewarding than you ever imagined.

Rita: Agreed.

Charles: So, the last advice that you would share with people would be?

Jodi: I would share with parents that, "Don't hesitate to reach out to others and really ask the questions you need to ask until you have the answers you need." Don't hesitate to educate yourself as much as possible on your child's condition, all the treatment options, who's out there, what's happening out there. Just keep going. Keep finding out more. Keep learning more. And just trust that all of it will be useful to you, that you'll be able to really manage and cope when you need to.

And if you really need help, if you're really struggling, don't be afraid to ask for whatever help you need because this is a heart disease. They are doing all this research on parent stress right now, and trauma, and PTSD. Don't feel bad if you can't cope. Reach out and get help because we're here for you. There are professionals who can help you, and there's nothing shameful about that. It's a hard disease to live with, and there is support for you available.

Charles: So if somebody wants to reach out to you, Jodi, what's the best way for them to do that?

Jodi: So if they go on the Mended Little Hearts website, it's www.mendedlittlehearts.org. There's a Contact Us. They can find their local chapter, they can get connected that way. We have a Facebook page, Mended Little Hearts National Organization. It has many, many people on it. And we have a private group for families called Mended Little Hearts - it's MLHCHD Chat, for families and patients. And we have Mended Little Angels Group for parents who have lost children, and those are both on Facebook. So you can reach out any of those ways.

Charles: Well, thank you for your time and thank you for all the work you're doing to help so many families. I think what you’re doing is remarkable.

Jodi: Well, thank you to all of you. I mean, Charles, you're really making a huge difference through this podcast. Thank you to all three of you. This makes a big difference to people. When some people hear other people's stories, it can really give them hope and inspire them in their lives. I really appreciate it.

Charles: Well, thank you for taking the time to be on it, Jodi. We greatly appreciate you and the work you're doing. And I'm sure we're going to stay in touch through all of this.

Jodi: Yes, thank you.

Charles: No problem.

Jodi: Glad to be here.

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