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Website
spk_0: 0:03
Welcome
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to heart to heart with Anna featuring your host Anna Dworsky. Our program is a program designed to empower the CH d or congenital heart defect community. Our program may also help families who have Children who are chronically ill by bringing information and encouragement to you in order to become an advocate for your community. Now here is an ID Dworsky.
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I have an edge or city and a host of heart to heart. With noona, we're in season nine, and our thickness season is advancements and congenital
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heart disease. Our show today is stem cells for an H L H s heart and our guest. This Jennifer Gutman. Jennifer government is the mother of Lucas, who is a hypoplastic left heart syndrome or Rachel HS survivor and the sister of Jared Constant, who passed away 30 years ago from HHS. Lucas is taking part in a special program at Mayo Clinic. Were stem cells taken from a biblical core Blood were injected into his right ventricle during Nicklin procedure. Lucas was diagnosed with Rachel HS in utero. When Lucas was born, his parents banked his umbilical cord. Lucas was a good candidate for the new program, so those parents. And Lucas is older. Brother Jacob all had echocardiograms. Jennifer and her husband, Bryant, gave blood and tissue samples for research. No one in Lucas is immediate. Family had an undiagnosed congenital heart defect. Lucas is 12 months post Glenn. At his last cardiology appointment, his cardiologists exclaimed, This is the best right ventricle I've ever seen. I'm going to have all my patients get stem cells. Mocha toe, heart to heart with Anna. Jennifer.
spk_5: 1:52
Thank you. I'm happy to be here.
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Well, I am so happy to see that nobody of Lucas is immediate family. Meaning not you. Your husband or your other son have any undiagnosed congenital heart defects. It must have been a relief to you to see that you didn't have a problem. That was undiagnosed.
spk_5: 2:13
Absolutely. I was very nervous getting those tests done and very relieved to hear that there was no other concerns.
spk_4: 2:20
Yeah. I am so sorry to see that your brother passed away from HHS. Was he older or younger than you?
spk_5: 2:27
He was a little bit older than me. I was born after he passed
spk_4: 2:31
My goodness. So you never got to meet him?
spk_5: 2:35
No, I did not He survived his Norwood surgery, which was very experimental at the time. In fact, insurance wouldn't even pay for it. So the doctor donated his time to attempt the surgery and he came through the Nor would he did have a cardiac arrest, but he was brought back and he ended up getting an infection and passed away from that a couple weeks later.
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Oh, no. It was an infection that got here.
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Yes. It was just one of those things being in the hospital. We all know that infections there definitely possible.
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And you get the worst bugs. The most resistant. Nastiest bugs possible covering the hospital. Your poor mother. She must have been devastated. Was she already pregnant with you?
spk_5: 3:27
No. No, she wasn't. I happened a year so later.
spk_4: 3:31
Okay, so that was a huge leap of faith on your parents part to decide to have another child after already losing one.
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At the time, it was not known that there was a genetic component of HHS and the doctor assured her you have other healthy Children. You should do what your heart feels. You need to D'oh.
spk_4: 3:51
Okay, So you have other older siblings, then?
spk_5: 3:54
Yes, I have three other older siblings.
spk_4: 3:57
Oh, wow. And none of them had any heart problems at all.
spk_5: 4:02
Not that we're aware of.
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Wow. Well, and I think you'd be aware of that by now, don't you? Hopefully. Wow. So what year was your brother born?
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It would have been 1985 I believe.
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Yeah. It definitely was still considered experimental way back then. How did he go to the hospital? Dr. Norwood was that Let's see an 85. He would have been either at Boston or a chop.
spk_5: 4:27
Unfortunately, not, they weren't aware of his condition or what the problem was with him. And they're in a more rural hospital. And they sent him to Fort Wayne, Indiana, and they sent him to Toledo. Toledo, Children's and Dr Davis performed the operation there. They no longer do these type of procedures at Toledo.
spk_4: 4:52
Yeah, there aren't as many facilities doing it as we heart parents would like when she say
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absolutely everybody wants it to be close to home. But sometimes you just have to travel a little bit. And luckily we were close by to a lot of very good heart centers where we live now.
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Yes. Yes, that is quite fortunate. How did losing a brother to HHS affect you? As you were growing up,
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I didn't fully understand what it meant to be born with half of the heart. It was something I never completely understood.
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I heard
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it was hard during, you know, around his birthday and special occasions that I could see in my parents eyes that they were missing a part of the family. But I always thought that it wasn't genetic. So I remember when I went in for an ultrasound for my first child, I asked about a chilly just and the tech said, Oh, no, that's not genetic. You don't have anything to worry about. And that child was born healthy, so I dismissed it.
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All right,
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well, well, in the next segment, we're going to talk more about the program at the Mayo Clinic. But before we take a quick break, how did you find out that your unborn child would be born with Angel hs? And how did you react to that news?
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We found out during the routine ultrasound at 22 weeks to find out the gender, and it was going very well until the tech became very silent, and I just knew something was wrong. So I pressured her, and she was very certain what she was saying. That it was a jolly just. And of course, my world shattered and I cried for longer than I ever thought possible, cause I was so worried that it was a death sentence and
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I
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couldn't understand how history was repeating itself
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there with your first born. Did you have an ultrasound? And were you worried about him possibly having a heart defect?
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I was. But they did tell me at the time the person who was doing the ultrasound that was in 2012 with my first born. They said that a chilly just in heart defects are not genetic there. There's no risk of him getting that. So I never believed. But something like this would happen. But a few years later, a lot of research has been done in. Everybody has learned a lot about PhDs and the fact that they can be genetic.
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Yeah, yeah, it's a different world.
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It's true.
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I noticed that with my two Children. Two. I have two sons, also born three years apart, and luckily for us. It was my second son who was born with a congenital heart defect because if it had been the first child, they weren't doing as many Norwood's in Texas.
spk_5: 7:52
Well,
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in fact, I don't think there was anybody who was really doing it when my first son was born. And so we got lucky that. And you don't feel like you're lucky that your troubles bar with her heart, too. But if the child had to be born with a heart defect, if the child was to be born with a heart defect in my family, I'm lucky it. What's my second born son? Because in that three year period, Dr John Calhoun had gone to study with Dr Norwood and came back to Texas and was doing a Norwood procedure in San Antonio. So you write three years could make a big difference. And it certainly has made a big difference in our understanding about the genetic component. No question about it. Well, we need to take a quick break, but thank you for sharing what you have so far. Don't leave yet listeners, because when we come back, Jennifer will talk about how she found out about the stem cell program at the Mayo Clinic on why Lucas has had surgery at two different hospitals will be back after this brief commercial break.
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The most common here is why
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she always needed a lot of attention. She had strokes,
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even though it's a national inclination to withdraw from the CHD community. I think being a part of it, help me be part of a solution. Heart to heart With Michael Please join us every Thursday at noon. Eastern. I'm Michael even on and I'll be your host as we talked with people from around the world who have experienced the most difficult moments.
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Anna Dworsky has written several books to empower the congenital Heart Defect or C H D community. These books could 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. Ana's other books, My Brother Needs an Operation, The Heart of a Father and Hypo Plastic 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. Welcome to our
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show. Heart to heart With Anna Show for their congenital heart defect community. Today's show is stem cells for initially just heart, and our guest is Jennifer Gutman. We've been talking to Jennifer about having lost a brother Thio, hypoplastic left Heart syndrome, or Rachel HS and then discovering her unborn son would also be born with a chile chests. So, Jennifer, before the break, we were talking about how you discovered Lucas would be born with hohs. I'm kind of surprised they didn't pick up on it until 22 weeks. So tell me how you found out really at that late stage about the stem cell program?
spk_5: 10:35
Well, lucky for me, I have an amazingly smart and talented sister in law who is a doctor. So when she found out about Lucas being diagnosed with H I V test, she ah did a lot of research and reaching out to different hospitals and doctors, and she really worked hard for us to help us get the best outcome for Lucas. And she actually called Dr Nelson at the Mayo Clinic and discuss things in doctors terms that maybe some of us don't quite fully understand. But, um, she was really great at helping explain the process and giving me her opinion on it, and she was very much in favor of us doing this. So I spoke with Dr Nelson and he really made a strong case, and I trusted him because he just sounded so genuine and honest, and he seemed like the kind of guy that's just doing it for all of the right reasons.
spk_4: 11:39
That's the impression I get to. Yeah, I just talked with a gentleman who called into my life Show this last week, and he works with Dr Nelson and was saying the exact same drunkard it. He is a very carrying, loving doctor and that he has some slots open for parents to call in and help consult with the parents even before the child is a patient to try and answer their questions and make them feel it ese. So it sounds to me like he did a great job.
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Absolutely. You know, it's a very new thing, but the risks were minimal from what we understood. There weren't a lot of risk, but there was a whole lot to gain. We did a lot of reading on her own. Just searching the Internet, looking at different countries what they're doing, the stem cells and everything was just so promising. We had to at least give Lucas this chance.
spk_4: 12:31
Yeah. Oh, absolutely. I wish we had known about this when my son was born. And it seems like science fiction.
spk_5: 12:38
It
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just seems on the most impossible that they can do this from cord blood. I just am astounded. So when the caller called into my program this last week, he was saying that the Karen and Todd wanted foundation are actually willing to pay for some people to have the cord blood extracted and then processed. And I guess you have to put it in a storage facility until it's time to use. It is not foundation the one that helped you as well. Or did you do it all on your own?
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No. They walked us through every single step of it. Karen, who works with Dr Nelson, is kind of the go to woman. She walked us through every step. They FedEx test the box containing all the directions for the sampling and everything like that So we just took it with us when we went to deliver and they mess injured it all the way back to Minnesota hand. There's a lot riding on whether or not you're a good candidate. I know that if you had certain complications Post, nor would they don't consider you to be a good candidate for this trial at this time. I know that there's other trials happening that occurred later on where you can use different types of stem cells and do it later on in life.
spk_4: 13:56
Oh, wow, that's good to know that it's not just dependent on having that cord blood. That's really good to know, right? That's awesome. That's awesome. So you did never felt like you were all alone and going through this?
spk_5: 14:07
No, they were so easy to get a hold of and so open and willing to help and explain. Karen even gave me your cell phone number. So everything went pretty smoothly with the collection. It was all a matter of waiting until they could review looks records and see how he did post Norwood. And if he would be a good candidate.
spk_4: 14:29
Okay. Okay. So why did he have his first surgery at Mott Children's Hospital instead of at the Mayo Clinic.
spk_5: 14:36
We live in north Central Ohio and Mott Children's is about an hour and 45 minutes away, and it's a lot farther. Mayo
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clinics.
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Much Children's was fantastic to I. Nothing negative to say about them. They were wonderful to us, but they did not offer the same opportunity. So that's why we went to Mayo Clinic.
spk_4: 14:59
Okay, that makes sense. Yes, Mott Children's is very well known for Dr Edward being Oye, and he's been called The Man with the Golden Hands and he he is such a loving and dear man. When I approached him, I think it was like 15 years ago. Now it's hard to believe. But when I approached him over a decade ago and told him that I was putting together a book was to be called the heart of a mother, and I asked him if he would write the foreword. He was just so sweet about it, and he actually did write the foreword for my books. I have the utmost respect for him, and then I was lucky enough to later attend a conference where he was a speaker. He was so wonderful about the way he talked to the doctors and what he said about the parents and how he said we were all part of the same team. I mean, he was just fabulous. I absolutely loved listening to him. I couldn't listen to him for hours on end. So,
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you know we love him. He stayed. Lucas is lighting. He did look for surgery, so
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Oh, you always We had talked to play
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from our
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heart. Oh, my gosh. You actually had to be Dr Bob Thio. Like us? Yes, that's a huge blessing. That's a huge blessing. Well, so that makes sense, then that the first surgery, which wasn't going to be using the stem cells, could be done at your I won't say local because in our ways, not local, but the closer hospital. But then he was deemed to be a good candidate for the stem cell program. Is that correct?
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Yes.
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And said that's why he had the second surgery at the Mayo Clinic. Right? Okay. Has it been difficult dealing with two different hospitals? I mean, sores insurance, anyway I can imagine, would be a nightmare.
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Well, in our cardiologists is at Toledo hospitals,
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and
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we also
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go to Cincinnati
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for something.
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Oh, my God, yeah, they're juggling. There's some
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juggling. Insurance is interesting. I'm sure they hate us.
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So how do you keep it all straight?
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I tried to keep everybody in the loop as best I can with appointments. I tried to be pretty thorough. It looks like we're gonna be going to Cincinnati Children's for his third surgery because his heart has done really well with all the surgeries. It's his airway. That's been the issue because he has paralyzed vocal court. E NT Doctor is in Cincinnati, so we'll be going there for the third.
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Oh, wow. My son ended up with paralyzed vocal cords after his second surgery. Really? Yes. And his diaphragm was partially paralyzed, and that was a whole other issue to have to deal with. We had to look oxygen around with us everywhere until his diaphragm healed, and they told me that his diaphragm might never heal. And they also said his local courts might never heal. But we got really, really lucky, and my background is in speech pathology. So, like it or not, he had therapy all day. I bet he did. It was just play therapy. And like you, I have a son who's older. And, of course, Joey was my best assistant ever. Everything that Joey did Alex wouldn't do, and so was very natural. It didn't feel like therapy because it was just normal place stuff. But thankfully, thanks to our Lady of the Lake University and the University of Texas at Austin providing such good training for me in the area of speech pathology, I was able to help Alex. And now he's 22 years old. And his voice is a little different than a traditional 22 year old who hasn't ever had open heart surgery because his vocal cords were damaged again in the third surgery. You know, like he hasn't had enough to deal with. But it was much less severe the last time that he had surgery, and so he came back from it faster. But still, it took a whole year before his voice was really back to normal. So do you have hope that Lucas's voice will come back? Or what Have they told you
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he can talk? It's just the breathing. That's the issue.
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Um,
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so far so good. But we want his e nt to intubate him because he's familiar with his vocal cords and his, you know, his specific anatomy. So in Cincinnati, of course, has a great heart centers. Whoa, we're concerned, but we are also considering vocal cord surgery. But for now, we're just kind of holding off
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because
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he seems to be doing okay.
spk_4: 19:34
Well, if you end up having that surgery, contact me again, Jennifer, because I have a friend who is also her patient, who, like our boys, suffered from vocal cord damage and he had the surgery, and he has nothing but good things to say about it. So if you do go their way, let me know. And I'll put you up with that young man.
spk_5: 19:54
That would be off.
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Yeah, I think it helps when you can talk to somebody who's already been there and experienced it. Oh, yeah, we're out of time again already. This is God really fast over. That's up. Take a quick commercial break. But don't leave the F friends, because when we come back, we're going to tell Jennifer about what advice she has for families who were interested in the benefits of stem cell procedures will be right back.
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When I saw somebody of the C H Street groups growing, I found family just ready to join May. Anyone who is a member of the adult congenital heart defect community can be a guest on our show. We have a great year plan that we look forward to sharing other interesting topics. Heart to heart With Poland David Serving a CHD community Wednesdays at noon. Eastern
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Anna Dworsky has spoken around the world at congenital heart defect events, and she is available as a key note or guest speaker. For your event. Go to heart to heart with anna dot com to learn more about booking Anna for your event. You can also find out more about the radio program. Keep up to date with CHD Resource is that information about advocacy groups as well as read Ana's Weakly Blawg. Anna wants you to stay well connected and participate in the C H D community. Visit Heart to Heart with anna dot com Today show
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Hart to Hart Madonna, A show for the congenital heart defect community. Today show is stem cells for an H. L. H s heart and our guest is Jennifer Gutman. We have been talking to Jennifer about how her son was taken into a wonderful program at the Mayo Clinic, where stem cells were used to help grow his right ventricle, Which, to me, this is just totally amazing. So we're going to tell it to Jennifer right now about what advice she has for others. So I'm sure, Jennifer, that whenever you talk about your son's surgery two people in the CHD community, they want to know more. So would you tell us what advice you have for a family that has just discovered their unborn child will be born with a chili? Jess,
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I would definitely say Get some books. Read, read, read. We bought a ton of books and studied a chilly just we Googled. We talked to many different doctors to get different opinions again. Lucky for me, my sister in law's of doctors, so she had some contact. She could use toe help us
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Way
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wanted to know everything about this that we possibly could so we could be prepared in the hospital. And when they brought him home, I think the online Facebook groups are great, but don't get wrapped up in all of the negative stories. Focus on how many people are doing really well with us and our living great lives talked to some adult a jolly gestures that have fantastic lives in there Such an inspiration for all of us. If you know that you're gonna have a baby with a chili just I would definitely look into thinking the umbilical cord blood with Mayo Clinic. Hopefully you're telling the candidate, If not, who knows what's gonna happen a few years from now? Because things are changing so rapidly and they're devoting so much into helping these kids live longer and healthier life,
spk_4: 23:20
right?
spk_5: 23:20
So don't just don't ever give up.
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I love that advice. And I think you're brilliant to say Go ahead and bank the umbilical cord blood, whether or not you're going to take partners program or not, because we don't know what might happen in the future. But you only have one shot to bank that umbilical cord blood.
spk_5: 23:40
Absolutely.
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Now, my caller from last week let me know that the Todd and Carole Moronic Foundation is actually paying to help with the harvesting and the storing of the umbilical cord blood. So Let's go ahead and let people know about that program. It's at the Mayo Clinic, and so if you are interested in getting more information, you can write to them at HHS at mayo dot eh? Ju and Dr Nelson is willing to give second opinions or do consultations with people during the week. He has eight slots open. So if you would like to talk to Dr Nelson, then you can send him an email at that same address or just go on line and get the phone number and call him or listen to my heart to heart with Anna Live Week eight program and you can get the phone numbers and contact information there. There's several different ways that you can get that information. So if you had to do it all over again, Jennifer, what would you do differently? And what would you not change?
spk_5: 24:51
That's a really tough question, because everything that happens seems to happen for a reason. In sometimes we don't know what that reason is, and sometimes we find out later on, I I don't know that I would change anything. I feel like everything we've done for him has been from our hearts. You know, in our opinion that in his best interest, I think he is as strong as he is today because of these damn phones.
spk_4: 25:19
That's wonderful. That's absolutely wonderful. So what is the best advice that you can offer parents of any child who's about to be born with a congenital heart defect?
spk_5: 25:32
I would have to stay to keep your head up prey research, get involved with the community. You can learn so much by getting involved with different organizations. Sisters by heart is a wonderful organization. Ben P. C. Q. I see was a great, great experience. It was a conference we went to in Cincinnati about quality improvement. Or actually just B is involved as you can possibly be, because it will only benefit your child. Be your child advocate and just stay strong and know that you know you're doing the best that you can.
spk_4: 26:11
Yes, I wish Sisters. My heart had been around when my son was diagnosed. For those of you who don't know, sisters by heart was started by some atrial HS moms, and they realize that all of us actually chose moms. We are sisters, and I feel like that with you, Jennifer. Even though I've just beginning to know you recently, I feel a very special bond with you, is there? The sisters by heart are specifically for Rachel Hs families. And they have a wonderful website. They have a Facebook group. They're very proactive. They do so much. Thio empower members of the HHS community. It really is inspiring to me what these women have been able to do. And I've heard some of their founders of that program speak a different conferences. They're also smart and very irritated, Wonderful and how they're just wonderful. I wish I had been around when my kid was first likeness, so I think you're right. Reaching out to some of those organizations is very healthy and also like what you said focus on the positive things that you can learn on Facebook because there will always be some people who don't have a good an outcome as you do. And there will be people who have a fabulous outcome too. So focus on the people who are doing well. Not that you can't provide support encouragement to those who are having a tough time, but especially when you're first diagnosed you want to surround yourself with as many positive people possible?
spk_5: 27:38
Absolutely.
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I just think that's really, really important. I feel that, like you said, we're all here for a reason. And I think that even a difficult times that we do go through, we go through for a reason. I think it toughens us up, don't you? Jennifer?
spk_5: 27:51
I really believe that we're all here for a reason,
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and I think those difficult times make us stronger. I feel like I'm a much better advocate for my sons because of what I've gone through. Then. If everything had always been perfect because life's not perfect,
spk_5: 28:07
absolutely, you'll never you'll never see the sunshine if you haven't felt the rain.
spk_4: 28:11
Exactly. Oh, I love that. Well, I cannot believe it, but our time is already up. Can you believe 30 minutes has gone by that quickly? Jennifer,
spk_5: 28:19
it was pretty fast.
spk_4: 28:21
It was so thankful that you came on the show and that you're starting off Season nine for May. I think this is fabulous.
spk_5: 28:29
Well, thanks for having me on Anna.
spk_4: 28:31
Well, thank you. And I hope to have you on the show again in the future where you can give us an update on how Lucas is doing
spk_5: 28:39
absolutely
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well. That does conclude this episode of heart to heart with Anna. Thanks for listening today. Please check out our website www dot heart to heart with anna dot com. We her so lucky to live in a time in history where we can share information like this with others, even though we're not doctors. I just think this is great that to heart Moms can talk about this kind of information and empower others in our community. So remember, my friends, you are not alone.
spk_1: 29:13
Thank
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you again for joining us this week. We hope you've been inspired and empowered to become an advocate for the congenital heart defect community. Heart to Heart With Anna with your host Anna Gorsky can be heard every Tuesday at 12 noon Eastern time. We'll talk again next week.