We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!
Anna's Buzzsprout Affiliate Link
Baby Blue Sound Collective
Social Media Pages:
Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website
We appreciate it when people support Hearts Unite the Globe podcasts. Thank you to our newest supporters -- Annie Ulchak (Patreon) and Judy Miller (Buzzsprout)!
Anna's Buzzsprout Affiliate Link
Baby Blue Sound Collective
Social Media Pages:
Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website
spk_0: 0:01
for a
spk_1: 0:06
heart to heart. With Anna. I am Anna Dworsky and a host of your program. This is the 11th episode of Season 12 and our theme this season. His organ donation and transplantation. I'm very excited today to feature Melanie's Levinsky. Today show was entitled Life Thanks to the Berlin Heart. Prior to transplantation, Melanie Slivinski has a heart mom in an advocate for eggs, a viewer. A young man who has had two heart transplants. Xavier was born on February 12th 2003 with cardio myopathy. He required a heart transplant, which he received on August 11th 2003. Egg Savior did incredibly well, but in this summer of 2012 he needed to be re listed due to transplant coronary artery disease. During his weight for his second transplant, Xavier and Melanie lived in a cardiac intensive care unit at the Children's Hospital of Philadelphia, also known as chopped egg. Xavier spent seven days on ECMO. He was then transitioned to the Berlin Heart by ventricular assist device and remained on that until he received his second donor heart. During his weight, Xavier suffered two strokes but was able to have successful Rumbek Timmy's, which is where blood clots are removed to reduce the damage that could be caused by a stroke. Xavier recovered beautifully and with very minimal side effects. He received the gift of life on January 13th 2013 at the age of nine. Welcome to heart to Heart with Animal une
spk_3: 1:30
hi, Thank you so much for having me.
spk_1: 1:32
Well, I'm so happy to talk to you today and to learn more about the Berlin heart and thrown Beck, Timmy's and a child who is how to transplants at such a young age. This is going to be a great show, so let's get right into it. Tour Little Egg Xavier has had quite the medical history in his short life. Yeah, yeah, it's just amazing to me what he has been through. You told me that he received his first transplant at the tender age of six months. How soon after birth was he put on the transplant list? He had
spk_3: 2:00
a couple of months. He was listed about a week before he actually received history. It's plant, so it was pretty fast for him.
spk_1: 2:07
That is really fast, So can you tell us a little bit more about what? Cardio myopathy. A ce
spk_3: 2:12
cardiomyopathy is kind of Ah, it's It's a broad diagnosis. It basically means muscular disease of the heart. His in particular started off as a week squeeze, and over time, his heart became enlarged.
spk_1: 2:24
Okay, tell us about his birth. Did he have a traumatic Burke?
spk_2: 2:28
Yes, unfortunately. His shoulder got stuck on my pelvis and he was
spk_3: 2:32
crowned for 40 minutes. During that 40 minutes time, they started to lose his heart. Read. He ended up having a massive heart attack. And then after he was born, he required four minutes of CPR.
spk_1: 2:43
Oh, my goodness. That must have been terrifying for you.
spk_3: 2:46
Yeah, I say that it's basically the happiest and scariest day of my life.
spk_1: 2:51
Wow. He was crowned for 40 minutes. Yeah, and they didn't do a c section on. You
spk_2: 2:58
know, at that point, it was kind of too late.
spk_3: 3:00
I begged for a C section.
spk_1: 3:01
I'm sure you did.
spk_3: 3:03
It was it was a 20 hour back labor. Once they started to lose his heart rate, we knew that things were getting very serious, but for some reason, they just refused to give me the C sections
spk_1: 3:15
Oh, my God. So the baby is finally born after what must seem like an eternity for you Was he blew when he was born?
spk_3: 3:24
Yeah, I affectionately called him my blueberry baby, yet beautiful strawberry blonde hair.
spk_2: 3:30
But he was completely blew. His Apcar score was zero when he was born.
spk_1: 3:34
Oh, my gosh. So they just Tim away immediately to do the CPR then, right? Bia, when did you get to see him?
spk_2: 3:42
I saw him for maybe a few seconds, and then they took him away
spk_3: 3:47
for a couple hours. At first they said they think that there might be something wrong, but they weren't sure. And then when they came back to me a few hours later, That's when they told me that they believed he had a sick heart, but they didn't really say much more at that point.
spk_1: 4:00
Wow. So you're recovering from this traumatic birth is extremely long labor. And you've been told your baby has a sick heart. How long were the two of you in the hospital?
spk_2: 4:11
He was transferred to a pediatric nic unit the following day and he spent 12 days there and then I was able to take him home
spk_1: 4:19
when you took him home, Did they give you a bunch of monitors? Or did they put him on a lot of medicine? He didn't have any
spk_2: 4:25
monitors, and he was only on two different medications. He was onto Jackson, which is a heart medication, and Lasix, which is a diuretic. Then he had monthly cardiology appointments with EKGs and echoes.
spk_1: 4:37
So they sent him home on just to Jackson and Lasix. So they mustn't have been too terribly concerned.
spk_2: 4:45
Yeah, typically, people can last a really long time with cardio myopathy. A lot of people have it and don't realize it until years later. Unfortunately, because he had that massive heart attack when he was born, it kind of set him up to fail. So he only had, like, four and 1/2 months with his native heart before he went in the heart failure.
spk_1: 5:03
Wow, that's just amazing to me that it would go bad so quickly and that you would have to face that. What were there warning signs that led you to know that he was going to require a heart transplant?
spk_2: 5:16
You know, I was pretty young and I was uneducated. They didn't really tell me a lot of stuff to look for. And the Internet wasn't what it is now. So there wasn't the ability to really research. It's kind of crazy how it happened, because just in the course of a weekend, he just kind of went downhill. But I thought that it was just a normal baby cold, you know, he was kind of lethargic. His complexion didn't look great, but he's a pale guy. Anyway, with the strawberry blonde hair and he slept a lot. He had some feeding difficulties, a little bit of labored breathing, But I just thought it was a typical little infant thing. It was the winter time, so people get sick in the winner.
spk_3: 5:54
He ended up having a cardiology appointment that Monday. I brought him in. They did his echo. They did his e k. G. And they told me that he was gonna have to go to the emergency room. They actually didn't
spk_2: 6:04
even call an ambulance. They had a nurse drive us in her minivan.
spk_1: 6:08
Oh, my goodness. Because that would have been faster than waiting for a train of sport team.
spk_3: 6:13
Yeah, and then once we got to the emergency room at the pediatric Hospital. I
spk_2: 6:18
I don't really want to say the name of it. They basically told me that they believed he needed a heart transplant and they don't perform that they're So the next day they were going to transport him to Children's Hospital of Philadelphia, which I'm eternally grateful that they did, because Chop has saved my son's life on numerous occasions. And to me, it's really the best Children's hospital in the world.
spk_1: 6:39
I know there are a lot of people who would agree with you. It certainly is world renowned for the good work that they do. That just blows my mind that she went for a regular cardiology appointment and then they said, Oh, we're taking you to the emergency room and oh, he needs a heart transplant. I mean, you must have been in shock.
spk_2: 6:56
Yeah, absolutely. Honestly, I only had one person may be mentioned the possibility of a heart transplant, but it was kind of in passing. It was one of the Nikki nurses. It wasn't even a cardiologists that said that to me, so
spk_1: 7:09
that's a lot to have to absorb, and especially if you are a really young mother.
spk_3: 7:14
Yeah, it is kind of a crash course.
spk_1: 7:16
Yeah, that's what I was thinking. Oh, my God. I should first you have a crash course on delivering a baby. Then you have a crash course on having a baby who has a bad heart. And now, okay, we're looking at heart transplantation. That's just a lot for a young mother. Have to absorb in all of that in six months time. Unbelievable. So it sounds like once you got past that and he received his part, which only waiting a week or so. That's pretty amazing. Wow, that's just really remarkable. And then you had a good years with Egg Xavier.
spk_3: 7:46
He had your typical transplant stuff going on, you know, in and out of the hospital for different viral infections and a couple of minor episodes of rejection. But nothing substantial or anything. He was able to live a pretty typical life. Go to school, go on vacation, be around other kids. So, you know, I really do cherish those 1st 8 years.
spk_1: 8:08
Absolutely. Well, how did you know that he was developed being transplant coronary artery disease or T c A. D. It kind of
spk_2: 8:15
over the course of about a year to a year and 1/2. He just He started getting sick more often, and it
spk_3: 8:21
was harder for him to recover from them. I started noticing little things like it would take him longer to walk to and from school. His stamina decreased. His complexion started to change. The only way that you can really diagnose transplant coronary artery disease is getting a cardiac catheterization and having an angiogram. And the day before, he had his cardiac catherization. You know, they do the pre admission testing, and I just had this feeling and I saw it on the echo. It's very, very difficult to see on the echo somehow, some way I knew that his echo was off, and when he went into the CAF lab, I told him, I said, Watch, you're going to see trans playing coronary artery disease. Let me know if you do, because I have this feeling and you know, Flo and behold, they came out and they said, somehow you managed to call this
spk_1: 9:13
Wow. So you went from being a naive young mother who didn't know anything to being able to diagnose your sons problem before they did.
spk_2: 9:23
Yeah, and like I said, they were really shocked. Because usually that's something that you have to have a
spk_3: 9:28
very distinguished I to be able to read on an echo. I don't know if it was this mother's instinct were what it was.
spk_2: 9:35
But when he had that
spk_0: 9:36
echo, something inside me started panicking. And I knew I just
spk_2: 9:40
I couldn't explain how I knew, but I just did
spk_4: 9:44
takes this hot industry. We're offering us a mechanical hot, and he said, now that I've had enough to give it to someone my father promised me, a golden dressed twirling held my hand and asked me where I wanted to go. Whatever stripe for conflict that we experienced in our long career together was always healed by humor. Heart
spk_5: 10:05
to heart With Michael Please join us every Thursday at noon, Eastern as we talk with people from around the world who have experienced those most difficult moments. Theo
spk_4: 10:19
Forever by the Baby Blue Sound collective. I think what I love so much about this CD is that some of the songs were inspired by the patient's. Many listeners will understand many of the different songs and what they've been inspired. Our new album will be available on iTunes. Amazon dot com. Spotify. I love the fact that the proceeds find this CD are actually going to help those with heart defects. Join Music Home
spk_1: 10:48
Tonight forever Melanie Before the break, we were talking about exhibitors, first heart transplant and the development of transplant coronary artery disease, which, according to my research, is theme, most significant cause of morbidity and mortality after transplant. So why don't you tell me now after you correctly diagnosed and then had it confirmed by the medical professionals that your son actually did have transplant coronary artery disease? What did they do? Basically,
spk_2: 11:20
they said that there's really no way that they can tell how faced it's gonna progress. It's kind of a guessing game. They put him on an additional med, which it does help with the squeeze, and for some reason it helps with the trains playing coronary artery disease. And then after that, it was just basically closer monitoring. He went home on a Holter monitor for a couple days, just having him seem more frequently and me keeping a closer eye on him at home.
spk_1: 11:47
Well, I'm sure the medical professionals were impressed that you picked up on what was wrong with him before they even knew what was wrong with him. I mean, that's great. That shows how in tune you were with your scent. So I'm sure that was helpful to them. So you said they sent him home on an extra drug. I guess it was kind of like two jocks, and then that helped the heart to squeeze better. Is that right?
spk_2: 12:11
Yes, it's cold wrap Immune.
spk_1: 12:13
They sent him home with this additional drug to help the heart pump better. And with you monitoring him with a Holter monitor, it sounds to me like you were seeing a cardiologists more often. How long was it before they knew that he would have to be listed again for another transplant?
spk_2: 12:31
Well, basically, we found out in the beginning of May, and they said that we want to get him listed by the end of the summer. We want to give him the summer, though, to be a typical kid and try to enjoy himself before he has to worry. And the only way
spk_3: 12:46
that they could list him was if they told him. So that's why we decided to give him the whole summer.
spk_1: 12:52
Yeah, so it's
spk_2: 12:54
basically like a summer where I had to keep a dirty secret and just kind of, you know, Hawkeye him and be a helicopter parent without him realizing it.
spk_1: 13:02
So you have a plan. The doctors have a plan. Luckily, an egg. Xavier is oblivious to the plan, just enjoying his summaries out of school for the summer. He's just having a good time. But something had to happen that triggered him heavy to go into the hospital. Or was it just on the schedule that on a certain date you were going to bring him to the hospital?
spk_2: 13:23
Well, we already had the date for the cardiology visit where we told him that was at the end of August. He was listed on August 31st close to the end of September, instead of it taking 10 minutes for himto walk someplace. It was taking him 1/2 an hour because he was needing
spk_3: 13:40
brakes. I had him at chop quite a bit for difficulty with breathing, labored breathing, and they were saying that it was his asthma. The week that he was admitted,
spk_2: 13:51
he was at the emergency room on Monday. A follow up with the pediatrician on Tuesday. The emergency room on Wednesday. I'll follow up with the pediatrician on Thursday. Friday was
spk_3: 14:01
his final emergency room visit, and I finally got him to admit him.
spk_1: 14:06
Oh, my gosh. Well, yeah, after a week like that, Yeah, clearly, there is something major going on and to keep going back over and over. And the emergency room is the last place you want a kid who is sick? Yes. Then they're gonna pick up who knows what
spk_3: 14:21
exactly. And, you know, even without beautiful every four hours around the clock and they had put him on steroids at that point, he was just He was retaining fluid. He was having a hard time eating because he was retaining so much fluid, and it was getting to be
spk_2: 14:36
quite a mess. So I'm glad that they finally admitted him.
spk_1: 14:39
So he's in the chop pediatric ward. Was he any? I see. You
spk_2: 14:44
know, he was not in the I c U. At that point, he was still in the regular step down cardiac unit. Thankfully.
spk_1: 14:51
And so now they're monitoring him. And you're suspecting this is not asthma? No, this is something else. It sounds to me like congestive heart failure.
spk_2: 14:59
That's exactly what was happening. And I kept telling them,
spk_3: 15:02
This is bigger than just asthma. This is his horror. It's running out of time. But the only way, like I said that you could know that is to do a cardiac catherization and an angiogram, and they didn't wanna have to subject him to too many of those with his heart in the condition that it waas
spk_1: 15:17
right. I understand that. So they've got him in the pediatric ward. They're trying all different kinds of things to see what they can do to help him without being invasive. And that's the problem with the catheterization. It's a very invasive procedure.
spk_2: 15:33
Yes, they typically have to go in through the groin and the neck,
spk_1: 15:36
So I'm assuming that's exactly what they had to do.
spk_2: 15:40
Yeah, it wasn't your typical cast. It was an emergency calf. They had him on the telemetry monitor and one of our favorite nurses. She had worked with adults before, and she saw what's called a tombstone. Usually that only happens in adults. So when they all came rushing into his room, expecting to find him passed out. He was sitting there playing video games, and they were completely shocked.
spk_1: 16:05
To be clear, the tombstone is actually an e k g meeting, right?
spk_2: 16:10
Yes. You know, after they saw that, they said, Okay, we need to act. We're not gonna hold off on this caf anymore. We're gonna do it tomorrow. And we're gonna hope that maybe we could place some stents in there to buy some time.
spk_1: 16:23
Substance in the coronary arteries?
spk_2: 16:26
Yes, because it's basically like if you think of the branches on a tree, the branches were starting to die off in his heart transplant. Coronary artery disease is a chronic long term rejection where the heart is inflamed and it swells up. And then those branches die off from lack of oxygen.
spk_1: 16:45
Wow. So he's in the hospital. They've identified the tombstone reading on the E K G, which is very serious, decide to Jews the catheterization they were dreading having to dio. But of course it shows them. Yes, there's definitely inflammation. And this is not a good situation. We have to act. Were they able to put stents in the coronary arteries?
spk_2: 17:07
Unfortunately, they were never able to get to that point. Once they got him into the cath lab, they realized that he was a lot sicker than appearances. Let on. That's when he ended up having to be put on ECMO, which is the most extreme form of life support. It's total heart lung bypass
spk_1: 17:25
right now. Do I remember correctly that he had strokes prior to being put on the ECMO?
spk_2: 17:32
No, actually, the strokes didn't come until he was on the Berlin heart.
spk_1: 17:35
Oh, okay, So the order is, he shows the tombstone. They realized he needs toe, have this catherization. Then they get him in a karaoke lab and they say, Oh, my goodness. Forget the sense. This is two Major. We're not gonna be able to do that. Did they immediately go to the Berlin Heart after that?
spk_2: 17:52
Well, he had seven days on ECMO, and after the fourth or fifth day, his circuits started to get a little weird and act funky with the Berlin Heart. You actually have to have him measured, and it's custom made, so it takes a couple days for it to actually be made and ship.
spk_1: 18:10
So he's on ECMO. They see things they're going in a bad direction. And they told you, we think we're going to need this ventricular assist device called a Berlin Heart. We're taking the measurement. You're going to have to wait a few days. Were you scared?
spk_2: 18:24
Absolutely. Without a deal, Just seeing ECMO itself. It's a very intimidating piece of medical equipment, and your child is completely knocked out. They really don't like movement because there's giant cannula ce in their neck. And if you move around, you could break that cannula and then you're hemorrhaging. So it's very, very intimidating to see.
spk_1: 18:47
Yeah, I can imagine. What kind of prognosis did they give you?
spk_2: 18:52
You know, there are Children that are able to successfully transition from ECMO to the Berlin Heart. ECMO is a very, very short term, temporary type of solution. Most kids, they don't suggest anything longer than a month. That's really pushing it. So a week was kind of. It was long and sketchy, but there are success stories, and thankfully, egg Xavier is one of them.
spk_1: 19:16
Well, it sounds to me like you are in the right place because shop is the kind of hospital that would have seen Children on ECMO and would have been able to tell you. Oh, yeah, We've had kids on Echo who had been able to transition off of it. So it wasn't a death sentence?
spk_2: 19:33
No. And you know, when you said the rape place, that's kind of eggs. Evers Whole theme is the right place at the right time. And the funny thing about Thea Berlin heart was it had just been FDA approved here in States in December of 2011 and when he was put on the Berlin Heart, it was October of 2012. So again, right place at the right time,
spk_1: 19:56
Yeah, he was one of the first ones to receive that special assist device.
spk_6: 20:02
Dworsky has written several books to empower the Congenital Heart Defect, or CHD community. These books can be found at amazon dot com or at our website www dot baby hearts press dot com. Her best seller is The Heart of a Mother, an anthology of stories written by women for women in the CHD community and his other books. My brother needs an operation the heart of a Father and hypoplastic left heart syndrome. A handbook for parents will help you understand that you are not alone. Visit baby hearts press dot com to find out more.
spk_0: 20:41
You are listening to heart to heart with Anna If you have a question or comment that you would like to dress down, show police in an email to Anna Dworsky at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com now back to heart to heart with Emma. So,
spk_1: 21:00
as we have said repeatedly during this show, it sounds like you were so lucky to be at the Children's Hospital of Philadelphia with Xavier. Not all the hospitals use the Berlin heart, and not all hospitals perform Throwback Timmy's. So when I got your Bio and I was reading about the Storm Beck, Timmy's my goodness, Melanie, this was the first time for me to hear this word. I had to go out on the Internet and research it. And so then I discovered not all hospitals do throw him back to me is that there are two different kinds of throwback Timmy's that can be done. One is where they actually remove the blood clot, and the others were. They used medicine to try to break up the blood clot. So tell us about the throne Back to bees that were done on it. Xavier.
spk_3: 21:44
Well, first, it was definitely not something that they had done there. They had to bring over one of the top neurosurgeons from the hospital of the University of Pennsylvania, which is directly next door to chop. They brought him over and he explained that
spk_2: 21:58
he hadn't done this on a child before and he really couldn't give us a prognosis as that point, he was going to do his best, and they basically went in through the artery in his neck, up to his brain, and they removed the blood clots that way.
spk_1: 22:14
That is just amazing to me. So for those of you who maybe this was a little bit fast for us to get into it. What happened prior to this was that Xavier presented as having a strip.
spk_2: 22:26
Yes, and we're very lucky that it happened in front of the nurse, another nurse who has had experience with adults. So he was able to recognise thes struck symptoms right away. He's punching me on the arm, waking me up, saying, You have to help me. He's not responding I jump up, they realize that he's had a stroke and they just kind of boom, boom, boom All the all the right actions were taken and he was taken down to interventional radiology where he was able to have this procedure performed
spk_1: 22:56
from the research that I did. Melanie Time is of the essence. If you don't catch this fast enough, there's nothing that can really be done
spk_2: 23:04
exactly. And with the way everything played out for him and the way he was able to get this procedure and the success, the immediate re profusion that they were able to see after they removed the blood clots, you know, they talk about him in neurology conferences around
spk_1: 23:20
the world. That's just amazing. So he had one stroke in front of them. Did he have the other struck while they were in the Operating Theatre? Or did he come back to his room and and have another one?
spk_2: 23:30
No, he came back to his room. This was the Tuesday before Thanksgiving that the 1st 1 happened. He came back to his room and he actually didn't have the other one until he had a diaphragm play. Cation surgery, probably about two weeks before his actual trains plant. We had, like a month and 1/2 in between these episodes.
spk_1: 23:50
So after the 1st 1 when they did the throne back to me, did all of the symptoms go away? Was he completely symptom free?
spk_2: 23:57
For the most part yet he did have some right sided weakness, but there was no paralysis like he initially presented.
spk_1: 24:05
Wow, that's just amazing. So did they immediately start doing some physical therapy with him? Or did they just decide? Let's wait until he gets his heart.
spk_2: 24:15
We did start some physical therapy. Unfortunately, he was very much bedridden because he was still intubated. One of the side effects of open heart surgery is you can have diaphragm paralysis because they accidentally cut the nerve. So one of his diet frames was down and it rode high. So he was never able to get the lung volume that he needed when he breathed, so he was not able to come off of the breathing tube. Whatever physical therapy we did, it was limited because he was stock in bed. Sure, so we had to do like range of movement type, type of things,
spk_1: 24:53
so it was more you moving him than him volitional removing himself.
spk_2: 24:57
Yes, Unfortunately, the best that we could do is faras ventilatory. Support is he was able to come off of the breathing tube and be put on the buy Pap and CPAP. But it was still a lot of extra support When he was on by Papin CPAP he was able to get out of bed, but he was so tired, just so weak, that his ability to actually perform Petey was very limited. That's ultimately why he ended up needing a trick after his transplant was for the purpose of rehabbing.
spk_1: 25:28
Wow, this poor kid went through so much, he really did. Oh my goodness. Though he's had two strokes, his honest Berlin heart How long was it that he was on a transplant list before he got his second heart? He was
spk_2: 25:43
on the Berlin for about four and 1/2 months before the heart became available.
spk_1: 25:49
Wow, that's a long time to be on a bi ventricular assist device.
spk_2: 25:54
Yes, it's a very dangerous type of situation there on continuous heparin he had hemorrhaged out before, So it was definitely difficult in those four and 1/2 months. He maybe had a dozen decent days, and the rest of them were very minute by minute for him.
spk_1: 26:11
Were you living in the hospital with him?
spk_2: 26:14
Yes. I was fortunate enough that my mother was still around. She was still alive, so she was able to be financially supportive and work full time so that I could be by his bedside.
spk_1: 26:27
Wow. I have a feeling that made a huge difference for eggs. A V er,
spk_2: 26:32
yeah. I was very fortunate. I was able to be at every single round where the doctors come outside of the room and they discussed the plan for the day. I was very fortunate that I was able to keep up with all of their medical lingo and stay on top of things and be ableto offer my input. The great thing about chop is if you're dedicated, they want to know what what you think has to be done to you become part of the team because you know, you're the eyes. You're the one who's always there.
spk_1: 27:02
Oh, my goodness. It should be that way. Plus, you have that mother's intuition which you had already proven when you diagnosis the T C I d. Yeah, tell us about the day that he got the gift of life. The second time,
spk_2: 27:14
you know, sleeps very hard to come by when you're in that situation. So I did manage to fall asleep, and I got woken up by his cardiologists and the fantastic surgeon that had put him on ECMO that had given him the Berlin heart. They came by, they woke me up for rounds and they said, Hey, we think we have a potential heart for him. It's not set in stone. Don't get too excited. We have to make sure that this heart is viable. And that was at about o'clock in the morning. By 12 o'clock, they said, This is the heart that we want to go with. He might need plasmapheresis, which is basically cleaning of any bodies out of the blood somehow someway, miraculously, he did not need that. You know, any body wise, it was like the perfect match. By seven o'clock, he was able to head on into the O. R. And then after midnight was when they were able to actually place the heart because the heart took a little bit longer getting there. So it was definitely a whirlwind type a day. Just trying to be patient, but not lose your mind in the process,
spk_1: 28:20
right? Did he have to be completely without food that entire time?
spk_2: 28:25
Yeah, but because he was on the breathing tube in stuff, he hadn't eaten anything in months. He wasn't allowed to eat or drink,
spk_1: 28:32
so that wasn't such a big deal for him. So he goes into the operating theatre. You said at midnight
spk_2: 28:39
he went in and about seven that evening. So about 11 hours after they told us they had a potential heart for him.
spk_1: 28:46
So he goes in to the operating theatre. It about 7 p.m. And how long was that operation
spk_2: 28:54
it clocked in at a little over seven hours. Because it wasn't just the transplant that had to take place. They had to remove the Berlin Heart devices well, and because he had been on heparin for so long, there was a lot of bleeding. They had to locate a source of the bleeding before they could even bring him out of the O. R. Thankfully, his doctor was extremely diligent and finding the source of the bleeding. So she could do her best to stop it before he came out, which I think was what really saved his life. Dr. Stephanie Fuller at Chop. She's our angel on earth. She saved him so many times.
spk_1: 29:31
Wow. So he came back, and when you saw him, what did you think?
spk_2: 29:36
I noticed that his color had gotten better, but it was, you know, it's still very traumatizing. He was still losing a lot of blood, and it wasn't all that much different from ECMO seeing him. Except he wasn't as bloated. And like he said, his color looked better. Like you could see him pinking up just before your eyes. Oh, wow. It is still very scary. But you knew the things were heading in the right direction.
spk_1: 29:58
How long was he knocked out before he started to come out of it?
spk_2: 30:03
It was like 3 to 5 days. Wow. It was quite a while just because it was such a traumatic surgery for him. And he had lost so much blood that they just wanted to keep him as still as possible for him to hell.
spk_1: 30:16
So they let him rest. Sounds like he really needed to rest after everything that he had done to here, I imagine just removing the Berlin heart. That was terribly traumatic to begin with since he was on heparin. But then, on top of that ad, taking out a heart of putting in a brand new heart or my goodness, that's major. It's actually quite impressive that the team was able to get it done as quickly as they did.
spk_2: 30:38
I kind of speechless when he put it that way. But, yeah, they absolutely were just amazing with the amount of time that it took them and the state that he was in going into the surgery. And, you know, they really did amazing things with my son. They took fantastic care of him. They took it really personal.
spk_1: 30:56
It sounds like it. It sounds like he became part of chop.
spk_2: 31:01
Yeah, he was a chop kid just about his whole life, and he's their rock star now. That's what they say because of everything that he endured and survived, and his outcome and everything.
spk_1: 31:11
And how is he doing today?
spk_2: 31:13
He's getting ready to go into his sophomore year of high school. He's completely ambulatory. He has use of his legs his arms. He goes on vacation. I was able to actually take him to Tokyo for a week last year, which was very, very scary, being 6700 miles away from chop in a place where I had to learn very little bits of conversational Japanese to survive. But we had a great time, and the best part of all was he didn't even get sick at all. Like you didn't catch anything on the plane. He came home. I was expecting him to be sick. No, he was fine.
spk_1: 31:47
Oh, that's such a wonderful story. Yeah, he's living the kind of life you would wish for your son.
spk_2: 31:54
Yes, his vocal cords were damaged, so his voice is a little raspy and he's not running marathons. But he's not a sporty type of kid anyway. He's more of like a play video games and hang out with his friends anyway, I can't complain.
spk_1: 32:08
Did his diaphragm completely heal?
spk_3: 32:11
Unfortunately, no. He had one side placated, which is where they pull down the diaphragm muscle and tack it to the abdominal wall. Unfortunately, with his transplant, the other diet frame was compromised, so he has one that rides a little bit high and the other one is tacked down in the place. I was told that the typical adult will get 11 ribs worth of long expansion. Ex gets about nine.
spk_1: 32:35
Okay, so it's okay. He can talk normally himself. Heard it doesn't impede his breathing. It doesn't probably put him in too much more of a risk for pneumonia. No,
spk_3: 32:47
he's able to clear his airways and lad stuff. If he gets a little bit of a respiratory thing, he needs a little bit of extra help with albuterol and some chest PT. But otherwise he's able to recover well from those types of things.
spk_1: 33:01
Well, this is just one of the most miraculous stories I've heard was so many things for one little guys have to go through.
spk_3: 33:09
Honestly, I've lived it with him by his side. That hole journey, the second trains playing. It's been five and 1/2 years since his second trains planes, and when I talk about it, I'm still like I can't believe that that was something that we lived through that that happened to my baby.
spk_1: 33:25
Yeah, I think sometimes when we go through traumatic experiences like that, you look back and you almost feel like it happened to somebody else.
spk_3: 33:32
Yeah, you feel like that's like maybe a movie or something. You know, you don't feel like it's actual real life. The traumas are still there in your heart, but you definitely see it as an outside of yourself experience when you explain it to other people.
spk_1: 33:47
I think that's a way for us to compartmentalize it so that we can still have our normal life. You normal for us is not, like normal for other people that that's the way that we can try and have some kind of normal life. Well, thank you so much for coming on the show, Melanie and sharing your amazing story.
spk_3: 34:06
Like I said, Thank you for inviting me. I feel honored, and I'm very glad to be able to tell excess story and to provide insight and hope for anybody else that might be going through a similar situation.
spk_1: 34:20
Well, I think that this story is definitely one that will provide hope, and that does conclude today's episode of Hart to Hart within and thanks for listening. Today, my friends find us on iTunes and permit and remember
spk_5: 34:37
to heart with Emma is a presentation of hearts, unite the globe and is part of the hug Podcast Network Hearts Unite The Globe is a nonprofit organization devoted to providing resource is to the congenital heart defect community to uplift and power and enrich the lives of our community members. If you would like access to free Resource, is pretending to the C H T community. Please visit our website at www congenital heart defects dot com for information about CHD, the hospitals that treat Children with CHD summer camps for CHD survivors and much, much more.
spk_0: 35:20
Thank you again for joining us this week way. Hope you have been inspired on Empowered to become an advocate for the congenital heart defects community. Heart to heart with Anna With your hose down, Dworsky can be heard every Tuesday at 12 noon Eastern time.