spk_0:   0:00
today's encore presentation is how parents relationships are affected by having a child with a congenital heart defect. This episode is very near and dear to my heart, because one of the guest happens to be my husband. This is from season one of heart to heart with Vienna, and the same for season one was You are not alone with this show. I really wanted us to talk about how parents relationships are effective when they have a child with a congenital heart defect, and I wanted to present it in a very positive light. I'm sure you will enjoy the special encore presentation today. Just happens to be my husbands and my 30th wedding anniversary. And so that is one of the reasons why I wanted to present this encore presentation today. I hope you under the special encore presentation with Brenda Signal likely Lowry in French War escaped as they investigate ways that parents relationships are affected by having a child with a congenital heart to fit.

spk_1:   1:04
Welcome to heart to Heart with Anna featuring your host Anna Dworsky. Our program is a program designed to empower the C H 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 urge or speak

spk_2:   1:29
the 11 episode of Heart to Heart with Anna the show for the congenital heart defect community under Voice America. Helpful on this channel. Our purpose is to empower members of our community which resource is support and advocacy information. To think that the code is called How Parents Relationships are Affected by having a child with a congenital heart defect have a course to the American Psychological Association. Marriage and divorce about common experiences in Western cultures. More than 90% of people married by age 50 Healthy marriage is a good bar couple of mental and physical help. They're also good for Children. Growing up in a happy home protects Children for mental, physical, educational and social problems. However, about 40 to 50% of married couples in the United States divorce. I scoured the Internet for statistics on families of Children with congenital heart defects and was only able to find one flaw. Study. A study was from 1979 and 1980 pediatric cardiology, and they only looked at 40 families of Children with tetralogy of flow. What they concluded was that trust you to repairable tetralogy. Apolo appears to be well tolerated in the family that is associated with no more family instability or marriage. The solution thin the childhood up the next to me, but I wonder how many families of Children with other congenital heart defects shared it. I mean that I had quite a few friends, Children with her to sex to a divorce. But likewise, I have a number of friends whose Children are heart healthy. And you also divorced together a 10 question survey and asked, for instance, line on Facebook and Twitter to take the survey. To my surprise, even though I came up with the survey idea, listen, 24 hours before the taping of his show, we had 305 people respond to the survey. Of those who responded, approximately 78% were married to the spouse they had the child, with 11% were divorced, 3% were separated. 6% were together but not married. 2%. We're not together and had never been married unless the 1% were widows or widowers. This means that according to my small sample, there are more married couples or families together but not married with Children with congenital heart defects. In the United States National Average event who answered the survey who were divorced? Approximately 48% said they felt their child's congenital heart. That contributed to the demise of the marriage, 30% that it was not a contributing factor, 18% that it was a partial factor, and 3% were unsure whether or not their child's heart that contributed to their divorce. Each of our guest today is the parent of a child with a congenital heart defect, our guest today or Brenda Signally, Leah and Lowry and Frank Dworsky. And they will tell us about what kind of relationship player and and how having a child with a congenital heart defect has affected their relationship. Brenda right? I am a single parent of two daughters, Karen, who is a 31 year old, feisty heart healthy young woman, and Jessica, 28 born my type of classical of heart syndrome. Jessica is the second oldest survivor of HHS from U. C L. A Medical Center. I was married during the 1st 2 surgeries. Just a cut endured the normal it. And then the Glenn shut procedures. By the third and final surgery, my marriage began to wane. And just because Father had left the state and abandonment family, which forced me to face this most difficult time without a in just a cut without a father, I was forced to go back to work. I spent the next 28 years working in the design department of a major apparel company, Olga Barna Co in Van Nuys, California. I couldn't have done it without the love, strength and protection from my very loving family, who supported and cared for us during a very trying time. Amelia and Frank, later in our show, taking Brenda for being on the show. Hi. And thank you

spk_3:   5:23
very much for having me.

spk_2:   5:26
Well, Brenda, you have one heart healthy daughter Kara. And you had her before you had your daughter Jessica with a heart defect. Can you tell us a little bit about your marriage in those early years and how things changed after you have Jessica? Yes. Um, we had

spk_3:   5:42
a very strong marriage. The first few years with very few problems with struggles, nothing out of what I would call ordinary. But looking back now, there were some signs, but at the time I didn't. I don't think I put a connection to it. Are realized that the problems that Larry was struggling with the time was post traumatic stress disorder and basically because he had served in Vietnam and in the late sixties and had seen some pretty horrible things there, and he rarely talked about his experiences. But there were some that that actually did leave scars and certain noise is what I noticed down the line. Certain noises in the house, you know, started and caused the reaction. And they haven grew into a more intense, uh, being, you know, after just after the birth of Jessica, you could just tell that he was being bothered, you know, very irritable and ability set in and his job began to wane and our finances were suffering. And so, um, I you know, I know now that I think I was in total denial of what was going on there and not able to I know what to do about it, how to fix it, you know. So my plate at that time was pretty full caring for the tube girls. And he's trying to hold down a job, too, at the same time. So, um, things started to unravel pretty quickly there.

spk_2:   7:30
Right, So it sounds like things were pretty complicated. I wasn't aware that your husband had ptsd from serving in the military. I wonder if having just because just exacerbated that condition up and call back.

spk_3:   7:47
Yes, he did have PTSD. Onda. He served in Vietnam, and I said he had seen some, I guess some pretty horrible things which he didn't like to share. But after the birth of Jessica and everything seemed to go pretty well for the 1st 3 or four years and the 1st 2 surgeries that she had gone through. And so it was, uh, in between the second and third surgery that things really started to deteriorate and, uh, began a drink with a little bit more than usual. And so that that was complicating things as well.

spk_2:   8:31
So it sounds like the first surgery You all weathered. Okay? And I actually understand from other periods that symptoms may be better in a crisis situation and that when the crisis is over, then they start to have problems. But it sounds like that's not exactly what happened with you. It sounds like you all were able to weather the first storm, but then it was between the surgery, but things started to deteriorate. Is that right?

spk_3:   8:57
Yes. Exactly. Um, you know, I believe that dealing with a child with very critical, life threatening circumstances is Jessica had and with all of the the stress that accompanies that it can, it can really cause some people to be stronger. And it can cause some people to be weaker. And and actually, you know, both of those things were taking place in my marriage, and I was dealing with both of those, you know, issues. And, um, the 1st 5 years of my marriage, it was, you know, pretty pretty. It was pretty trying because of everything. You know, I would say the same that anybody else would, as far as that goes. But it just became more complicated with all of the drinking issues and things like that. And the uncertainties that we didn't know what was happening with Jessica, And that was simply horrifying. You know,

spk_2:   10:03
right? Would you tell our listeners a year that Jessica was born? Yeah,

spk_3:   10:07
she was born in 1985.

spk_2:   10:10
So that was quite a long time ago. And she hasn't practically a pioneer. Especially in your part of the country for surviving the surgical repairs. Yes. Um, yeah. She was

spk_3:   10:21
the second oldest survivor. U C l A. And so it was, you know, at the time to we were given a 1% chance. We were told when they were describing what we were going to go through and how they were going to do this, that it was 1% chance of survival. And that was just pretty overwhelming and scary and its own sense. But

spk_2:   10:49
right. And you didn't even have a support group to turn Teoh. I mean, you were really kind of out there all by yourself. And this is in the days before the Internet. He must have felt so unbelievably lonely.

spk_3:   11:00
Absolutely. I remember going into the library that u c l A, uh, point when we were down there for some of our visit, some things trying to find and scrape up any kind of information that I could pull together, and I I was sitting on the floor of the library there, and I found one book with one little sentencer to I think it had and it it was just very basic. It just kind of described, you know, Heiple plastic left heart with no references or anything like that to turn to. So, yeah, it was very, very scary And, you know, confusing. To say the least. I the only thing I actually knew about hypoplastic left heart. I had done some reading. Um, was that, uh, there was another baby had been born baby fae, um, with the same condition. And I believe she lasted 19 days on and she had the baboon heart transplant. It's like, I'm sure most of us. No, that case.

spk_2:   12:06
Absolutely. While most of us older parents, sure I don't know if the newbie parents do you know about that? But yes. And that was all over the news. That was all over the news when I was in high school. And so when Alex was born and the doctor was telling me about the condition, I said to him, Well, can he get a transplant? And he said no and I said, Well, I thought that there was a baby that got a baboon heart transplant. Come to find out my son had the same heart defect that she did. But our son was a part failure. The transplant wasn't even an option with treated plant, even an option. Actually,

spk_3:   12:47
it waas um, at that time, um,

spk_2:   12:52
she would have

spk_3:   12:52
been the first heart transplant at U C. L A. On. And they were prepping her for that. You know, um, I had received a phone call, and they were talking about doing this. But during the time during the wait time that Jessica had another little boy was given the heart transplant, and it was down at Loma Linda. And excuse me. And, uh, Loma Linda, I believe that heart transplant went to get his name right. I think it was baby Gabriel. I'm not I'm not really sure

spk_2:   13:30
I remember reading about him. Yes.

spk_3:   13:32
Yeah. And so because of that, they had no choice but to go ahead with the Norwood procedure. And, you know, I was Of course I was fine with that. I just all I knew as I just wanted my baby to live and whenever you know whatever it took to to do that I was game for it.

spk_2:   13:56
Yes, I felt this was willing todo

spk_3:   14:01
we all of that weight will probably all you know, it's kind of amazing to to me is that we've all felt the same reading over your you know, a lot of your website and everything in the people that have come in and left messages and comments. It's it's amazing how close we all are together in this and how feelings all seem to mesh with each other's. You know, we've been through everything the same, the same feelings in the same circumstance. And it's just amazing to me, you know, over all of these years, mine happening 27 28 years ago and even now still is. You know, as long as this has been going on, the feelings and circumstances are all still pretty close. You know, the same.

spk_2:   14:49
They really are. Brenda. So my people we go to break If you could just give us a piece of advice to help parents who are facing having multiple surgeries with their Children. What would be the one golden nugget of advice you would share

spk_3:   15:05
my advice for others would be. For any parent facing such a difficult situation, with first before must be to stand strong in your faith. And, you know, if you have a family that is there to support you, let them support you. Let them allow them to be there for you. And, you know, doing doing this alone is it's almost impossible. And your child needs all of the love and support, of course, that the family can muster up. So that would be one of, you know, my my biggest things. But if I have a chance to say, you know, when um my mother found out about this she told me, Brenda, he never will give you more than you can handle. And that stuck with me and you know that that's where I got the title for. You know, my little story that I did in the heart of the mother, you know, never more than you can handle. That's where that came from. And, boy, it sure has rang true with may.

spk_2:   16:11
Absolutely. Well, thank you for your advice and sharing your experiences with us, Brenda. Now I have to go to a commercial break But don't be easy coming up. We have another heart. Mom will be sharing her story with us. Find out how she dealt with the board, loneliness and depression and whether or not she ever Fama began When we return to heart to heart with Anna

spk_1:   16:41
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 her 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. Anna Dworsky has spoken around the world at congenital heart defect events, and she is available as a keynote 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 Anna's weekly Blawg. ANA wants you to stay well connected and participate in the CHP community. Visit heart to heart with anna dot com. Today you are listening to heart to heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Gorski 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 Anna Welcome back to

spk_2:   18:19
our show. Heart to Heart with Deanna the show for the congenital heart defect community. Today we're talking with congenital heart defect parents and how having a child with a congenital heart defect has affected their marriage. We just finished talking with Burns, Brenda Pignoli about her experience with abandonment by her husband after he couldn't handle having a chronically ill child and how Brendan, her lovely daughters, have thrived in spite of that. And now we will turn our attention to Leah Lolly, Leah wrote. My name is Lee Lolly. I'm a mother of 52 of which are in heaven. I have one girl and four boys. I'm a funeral director and bomber on work part time at Greater Jackson Mortuary. I am the founder of Praying Heart, which is a Christian support group for heart families. I have served as a coordinator for Mississippi. Mended little heart. I spend lots of time working with heart families of fundraising for Mississippi's Fashion Children's Hospital I want It was a passion given to me after my journey with my son. Pierce was born with critical aortic. Stiffness is we lost Jonathan when he was three years old. He was killed in a car accident in 2000 and three. Then we lost Pierce the three months of age when he lost his fight with his congenital heart defect. On January 15th 2000 and 10 my marriage wasn't able to withstand so much loss. I have since remarried a wonderful man, Bobby Lowry, who is supportive of all of my efforts to help other families. We will meet French warty in our next segment. Thank you for coming on heart to heart with Donna. Hi, Anna. Thank you for having me, Malia. It's hard enough for any couple to lose even one child, but to lose to Children in just a matter of years, it's almost incomprehensible to me. Can you tell us what your relationship with your husband was like before you lost Jonathan appears, um, with any marriage

spk_4:   20:10
we had, our normal are normal strains. But sadly, before Pierce's born, we were legally separated. Um, we did not know anything was wrong with Piers while I was pregnant, and until shortly after he was born, we were informed that he had critical aortic stenosis. Um, and native services, Um, asap, Um, Pierce his journey actually pulled me and my husband back together because we flew from Mississippi to watch it in D. C for help. Um, and then shortly after a month, they're We played a little rock, Arkansas too late for a heart transplant. And my husband and I were just so committed that no matter what we had to do to get along and for the other Children to get pierced a new heart and get home, we were going to do it. And we we worked hard together through that.

spk_2:   21:05
The your experience clearly mirrors other people that I have taught you that said that having to fight this monster known as congenital heart defects, it actually brought you and your husband closer. It did. It did the law that it must have been the loss to terrible losses. How close? Where the losses

spk_4:   21:30
within seven years apart from 2000 and 3 to 2010.

spk_2:   21:35
Oh, so, um, did you go to grief counseling to try and deal with? He was not up for counseling. Um, I think he

spk_4:   21:45
had more trouble feeling left out. And because of the passion and the things that I started doing in Pierce his name and legacy, it angered him in and he said he felt like using Pierce's story was helping all these other Children and heart families live. But yet we lost ours, and he just he couldn't work through that.

spk_2:   22:07
Yeah, on. Do you see people, men and women who will get stuck in one of those areas of grief neither the blaming or the anger phase, and it's so hard toe work to get out of it? And I really think that you have to work to get out of it. It doesn't happen by itself. It's easy to get stuck. Yes, you do have to work at it. Yes. So you became a grief counselor or you studied grief counseling. Isn't that true?

spk_4:   22:36
Indian? When I went back to school in mortuary, where we learned a lot through grief counseling and dealing with families, especially families, that was Children. Because that's one of the the heart of families that you'll ever deal with

spk_2:   22:49
and this naturally before. I can't imagine facing that voluntarily on a regular basis like you must when you first started to have to deal with families who lost a child, did a wave of emotion come over? You did it. Thank you. Back to you losing your son. Oh, no, no, no, no. It gave me a passion

spk_4:   23:12
because I've already experienced that hurt on that disappointment and just that emptiness that goes there. So when families that I have worked with come in and have experienced that, it kind of gives me an extra touch to know what to make everything flow for them and to make it easier for them and to make it memorable.

spk_2:   23:31
Wow, that's a real gift. That is a gift for you to be able to take your tragedy and turn it into a vehicle to help other families. I

spk_4:   23:39
enjoy doing it. I found a lot of purpose and passion out of it. A lot of fulfillment.

spk_2:   23:45
So what bites would you give to other parents who are facing marital problems due to having a child with a heart defect? I would say, even

spk_4:   23:53
with any marriage, it's a team working effort. You're in it together for each other and for the Children. And I try even now with all the heart. Families will work with the Mississippi to encourage them, you know, to stand strong and support each other. Um, not just for your marriage, but for your Children and your heart child, because they need both mom and dad there. I need each other for support.

spk_2:   24:15
All right, that's true. So tragic is your story could be You have found love again, and I found that to be very inspirational. So can you tell us a little bit about what it was like for you to find your current husband? And what is next for your Children to have ah father in your life, uh, badly

spk_4:   24:35
have been amazing? Most men. And it would probably be scared to even try to date a single mother that's lost two Children. That would be a red flag. But he wasn't. I think he was very intrigued with me. And he is so supportive of all the work and the things that we do for our hospital. And hey seems to enjoy meeting a lot of the families. And I'm working in the projects and things that we do.

spk_2:   25:00
He must be a very special man. I think

spk_4:   25:03
he has tell him all the time that God sent him to me.

spk_2:   25:07
It sounds like you needed someone like him in your life, too, because you suffered the loss of two Children and then you suffered the loss of your marriage. So you went through three major losses in a fairly short period of time. I did, and he has

spk_4:   25:23
been really good Anna with dealing with things. There are as anybody that gets divorced or experienced the loss of a loved one. There are comes when someone's behavior, you know, is different. And he's good at taking a step back and trying to realize, you know, what is Leah thinking or how is she feeling before I say something.

spk_2:   25:42
A very wise man. A lot of man would not do

spk_4:   25:46
that. But there's moments and I just put my arms around him and hug him. And I just tell him I love you. And thank you for putting up with me.

spk_2:   25:53
Yeah. Wow. It sounds like he is such a special person. So tell me what would be your last piece of advice that you would offer our Listen, there is a professional. And as a mom, you've been through so much with considering the loss that you had the loss of the dream of having a perfect child. And then you lost your Children to death, and then you lost your marriage. So you've dealt with a lot of loss. What can you What kind of advice can you give our listeners about dealing with that loss and how to make it through and be happy again? Well, the first thing of

spk_4:   26:30
telling us that you just you have to find God and hold on to him. And one of my favorite scriptures is thieves stealing. Now that I'm God some 40 16. Um, I don't think without God surrounding me with so many family friends and support what I've made it there would have been through. And I've also learned to become a victor instead of a victim. In every situation that happens, hold your head up and keep on going and putting one foot in front of the other on God will bless you. Um, things will end up slowly turning out because it is hardly in a child. It's hard getting divorced, and it's hard having a child. As you said, it's not born perfect or that has a heart defect. Then you have to just surround yourself with friends. Be open for that. Don't shut it out.

spk_2:   27:13
So it sounds to me like a lot of your friends are on Facebook. Did you have a lot of Facebook friends when you were going through all of this? Or is this something that you for? You, um, had an

spk_4:   27:25
average group of friends, Anna. But, you know, when I went through this, there were heart moans that just came out of the woodworks to me. Two very special people here, Mississippi Christie, Opinion. Aaron ask you that. Never let a dig about. Once they heard of my journey, e mailed me, um, and spoke with me constantly and that was so uplifting to log in and see all these millions of I'm a heart mom to, you know, I'm praying

spk_2:   27:48
for you thinking about you. Maybe not alone, Right, Right. In fact, it was Christie Pina who told me about you. And when she found out I was doing the show, she said, Oh, my goodness, you have to have Lee on your show. She's

spk_4:   28:02
so sweet. She had a backbone for May. Even since it's been going on four years since I've also here. She was still such a backbone for me.

spk_2:   28:10
Well, and I think that that just shows our listeners that me, moms and dads in the heart world we have the chance to reach out and help other people who are going through the same things that were going through are even going through something different from us. But just because we're all heart Mom's, it couldn't make the sisters and brothers in in a very special world. Don't you think I do?

spk_4:   28:32
I do, and I think we should share our stories and reach out to others because, like I said, it lets them know that they're not alone, but they're not the only ones that are dealing with this. But there are others

spk_2:   28:42
absolutely that I couldn't say it better myself. Thank you so much for being on the show. Leah Talal. Thank Anna for having me of the pleasure when our commercial break, but don't go far. Stay tuned to find out how another parent of a child with a critical congenital heart defect that was his relationships and find out what this nurse thinks has helped him to cope when we returned a heart to heart

spk_1:   29:05
with Anna Dworsky has spoken around the world at congenital heart defect events, and she is available as a keynote 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 Anna's weekly Blawg. ANA wants you to stay well connected and participate in the CHD community. Visit Heart to Heart with anna dot com Today, 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 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. You are listening to heart to heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Gorski 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 Anna

spk_2:   30:51
Welcome back to our show Heart to her birthday on a show for the congenital heart defect community. We've been talking to her parents about how having a child with congenital heart defects affect our relationship. We just finished argument Brenda and her experience with divorce and Lida and her experience with divorce and remarriage in the heart community, and now we will make French a whiskey. I'm the father of two sons, Justice, who was 22 heart healthy, and Alexander, who is 19 and was diagnosed with Have a Political Syndrome or Rachel HS after birth. My wife, Deanna, and I went through two open heart surgeries with Alex before his first birthday and 1/3 when Alex was 17. We have been happily married for 27 years. We live in Central Texas, where I work is a certified registered nurse anaesthetist. My wife, Deanna, is the author and publisher of several books waiting for the congenital heart of that community, and I have assisted hers. Illustrator and editor. I am also the vice president of Baby Hearts Press and the vice president of the nonprofit organization that they found it called Hearts Unite the Globe. I am an avid supporter and advocate for the congenital heart defect community. Welcome to heart to heart, Frank. Let's start your segment by sharing that you are not only my guest, but you're also my husband.

spk_6:   32:09
Yes, I am. And finally I get to be on your show. I've been looking forward to this.

spk_2:   32:13
I know I'm looking forward to two. We haven't really discussed the questions beforehand, so I'm eager to see what you decide to say. So let's stop talking about how you first found out about Alex's heart effect and how that affected jail.

spk_6:   32:27
Well, when Alex was born literally seconds after he was born, it looked to me like he was breathing too fast. I am a nurse and I've seen a lot of babies, and he seemed like he was breathing very rapidly. And I told the pediatrician that correction, the OBY gyn doctor that. And she said, Oh, don't worry about it. It's newborn breathing. He's fine. That went on for eight weeks, eight weeks of fast breathing, difficulty feeding all kinds of problems, keeping him awake during feeding. And you and I were both suspicious. There was something more going on, but everybody told us he was fine. And then at eight weeks he went for, well, baby checkup and you called be from the clinic and said, they're admitting Alex in the hospital. That's we found out he had a more serious problem. That was also when they put him in the hospital and the doctors first suspicion was he might have assisted five roses, and so we were worried about that. And they were gonna test him next day. But the night he was in the hospital at our local hospital, one of the nurses on the floor insisted that the president get a chest X ray, which hadn't been done, which looking back on it is just unexplainable. The chest X ray showed that he apparently had a very mark's heart. Probably congenital heart defect that changed the path of their diagnosis very rapidly. He got a echocardiogram the next day. They did a echo that surely he did have a complex heart defect. Senator San Antonio. He was categorised. Did a heart cath that there the next day? That can't recall. Exactly. And they decided that he had a complex, defective, required surgery. So it was a very fast transition from we hit this thing wrong. Do we know exactly what's wrong?

spk_2:   33:56
But how did that make you feel? I mean, I remember back then it felt like it was a whirlwind. Everything happened so fast. How were you feeling at that time?

spk_6:   34:06
Well, at the time, I didn't know much about congestive back congenital heart defects or pediatric our problems. And I really did not know how serious it was, but that doesn't mean I think it was serious. I didn't know if he was going to be fine or if he was gonna die and route to the hospital in San Antonio. It was a two hour drive. It was terrifying. But I couldn't write with you. I had to go take care of our other son and you'd worked on animals with him. I was just glad that he was still alive when I got there.

spk_2:   34:32
Yes, I know. For me, that was one of the worst part was that we were separated by three hours from the time that I like. The hospital took three hours to get to the next hospital. You were still trying to take care of Joey, and I think we were both trying to figure out when the world was going on. And this was in the days before soft bones. Today we would be texting back forth with each other, but back then we had no communication.

spk_6:   34:58
Yes, and I do recall that after he was transported out and I went to go take care of Joey. One thing I want to do is go back to the doctors who had told us other things wrong and yell at them and say, See, we were right There is something wrong?

spk_2:   35:12
Yeah, I can imagine you felt angry because for the listeners who don't know our story, we have been taking Alex back and forth to the hospital every other day for the 1st 10 days of his life because both of us were so concerned. And then, of course, he had it one month. Well, baby checkup. We were still concerned at that point, and I had taken him to see, like, Keisha consultants for that whole eight weeks. You and I were saying somebody long, something's wrong and nobody would agree with us. Nobody would listen to us, so I know that you had to be angry. I was extremely frustrated, too. So what advice would you give to another family who is experiencing something like what you and I did where you know something is wrong? But then the professionals are telling, you know, it's it's okay and then you do find out something devastating is really wrong with your child?

spk_6:   36:02
Well, the first stage when they're telling you Oh, everything's OK. I would suggest to be persistent and do some reading as early as you can into what the symptoms are, what they could indicate and ask people from different areas if you can. And then once you find out, you have to let the anger go and just focus on taking care of your child as fast as possible.

spk_2:   36:19
Yeah, I think that's excellent advice. Think things were a little bit different for you because you were a nurse and you had already worked in an intensive care unit? Can you tell our listeners some of the difficulties so that you experienced because of your nursing background and how you handle things differently with Alex's second and third operations?

spk_6:   36:39
Well, first of all, my experience was not in pediatric. I C. Was an adult. I see which there are a lot of similarities, and a lot of difference is one of the things that made it a lot easier for me was that when you see a child, you see anybody who's in your family in the I C. U. And they have been seriously ill had an injury or a surgery is that they have IV's and drains and tubes and wires, and that that in itself is very scary and unnatural. But to me, it was most natural thing in the world. I saw that all the time, so that didn't bother me. I could see Alex with all that equipment on him and still see that was Alex. I wasn't distracted by the other things, and I also wasn't bothered by blood and things like that, which affected a lot of it that will differently. I would have to say that dealing with the nurses and doctors in the unit was potentially one of the biggest hazards, because some of the nurses didn't want to acknowledge the fact that I was a nurse and in fact told me when I was there, I wasn't a nurse. I was just dad, But the best that support that I had was from Alexa, surgeon Dr. His surgeon told us bluntly that that and then the nurses that they should listen to being respect me and answer my questions honestly. And so every day when I came in to see him, I read his chart. I read everything was new coming out the lab, working that sort of thing. And the surgeon respected me and actually took me and show me this morning X rays every day explained was going on. And so that that communication, in the respect that I got from the staff, made a big difference and enabled me to communicate with the rest of the family also until him was going on, hopefully in a more meaningful way. Now, second and third surgeries were better prepared, and I made a huge difference, especially for the third surgery. Because Alexander, during the third surgery, he I was conscious of. Everything is a course. He wasn't as a baby. And so he trusted me and he'd be believed that I knew what I was talking about. And if the nurses and doctors told of a thing and I told him the same thing, he was more likely to believe it and go along with it. That was a good thing.

spk_2:   38:30
I think that was a good thing. And I think what she said about Dr Calhoun being respectful of you, that was very helpful. I don't know if you're aware of this, but I found out during a second operation that some of the nurses thought we were abusive parents because Alex is so late in being diagnosed. And I think unfortunately, some of them kind of held it at arm's length because they were assessing if we were abusive parents or not.

spk_6:   38:57
I had heard that you told me about that, and that's frustrating deal with. But it is very common speaking as a nurse myself that if you see a child who has problems, that you're not necessarily injuries. But problems like these that appear to have been skipped over it would be very easy to think that they had been abusive or neglectful parents, and I understand what that coming comes from. But it also makes me more aware now as a nurse, to be more respectful, the parents into do not assume that there's a problem to go with the basic ideas. They are caring parents first. They'll make an assumption one of them. One of the most fascinating experience I had in Alex's second hospitalization was I was on duty as work because you and I shifted days and nights and I was on night shift and Dr Calhoun came in to see Alex and said and said, Hey, I'm going to give a talk to the medical students. Do you want to come along? And so I went with him over to the building next door, and I sat in the back of a group of about 30 medical students, and he told them about high class left heart syndrome and the impact on families. That was the purpose of his lecture. Then he turned to me and said, Tell me what you think about this and tell the students your experience. And so I got electric medical students for 20 minutes about what it's like being a parent. And it was a tremendous stroked my ego to be told that I that my opinion mattered and I really enjoyed it. I hope they give some of those students a chance to understand. The parents are still human beings, and we want to know what's going on, too.

spk_2:   40:15
I'm sure you did. I'm sure you were very articulate, and you were able to explain to these medical students what it's like to be the parent of a child with a heart defect. Most people, thankfully, who are going through medical school don't have a child who has a heart defect, and I think that it helps them to hear from people like you, to me and the other people who are talking with us on this radio show about what it is like for us, because I think that can make them more compassionate. Doctors.

spk_6:   40:44
I agree completely

spk_2:   40:47
frank, which is the single most important thing you think that we did together that helped us get through all of Alex's operations and uncertainties and still keep this marriage. I think you've been stronger than ever before.

spk_6:   41:02
I agree. Our marriage has gotten Stormers this, although it's not not a path I would recommend. It's a therapy for people that have medical problems. It's too hard of a road that way. But I would say the single most important thing we do is we communicate. We talk about what our feelings are when things were going wrong. We talk about things that we can do to make things better. We try to understand each other and we talk a lot about all kinds of things. We talking, writing, we talk face to face and we talk with our kids to communication is so important to success as a married couple, and it's 10 times more so when you have a critical health problem like this. And if you don't tell people that you're feeling scared or upset or you don't understand things, then the problems just multiply because you're not communicating.

spk_2:   41:42
I agree with you. I think communication is essential. And unfortunately, when you're going through a crisis like this, sometimes you're going through a phase of grief where it's hard to communicate. And I really appreciated when we were going through some really difficult times when you knew I just needed some time in space and I couldn't talk, and I think we were both good. It just giving each other from time and space when we felt the other person needed it. But we always were there to talk with each other through everything. I agree with you. Well, thank you so much for being on the show, and I want to think again. Brenda and Leah and I think this has been a really important show to talk about how having a child with a congenital heart defect does affect relationships. I think it's it's a no brainer. Of course, having something this stressful is going to excite relationships. But I really appreciate Brandon Lee and Frank sharing their experiences and their advice for how we can get through this and be empowered, not be victim, but really like what he has said about being a victor. And I do think that even though this is a very difficult thing to go through, that we can come out stronger, each of us individually and couples before lucky enough to be able to work through it. But now it's time for another commercial break. Don't leave you because we still have our miracle moment and today's miracle moment. It comes from the heart of a father, and it's entitled Battling the Dragon. You'll hear more about that when we return.

spk_1:   43:21
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 and as 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. Anna Dworsky has spoken around the world at congenital heart defect events, and she is available as a keynote 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 Anna's weekly Blawg. ANA wants you to stay well connected and participate in the CHP community. Visit heart to heart with anna dot com. Today you are listening to heart to heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Gorski 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 Anna for our miracle moment

spk_2:   45:00
for Miracle Moment Today comes from the heart of a father, and it's written by Andrew Ward, and Report is entitled Battling the Dragon and He Right. I sometimes wonder what we frequently expect. A happy ending. I once went to the cinema to watch a film called Dragon's Player. It was traditional fantasy fare, a virgin sacrifices offered to a dragon in return for sparing the kingdom. And the valiant young knight must save the day when the princess's love Onley in Brighton Player the Dragon eats the princess, then nearly killed the night The night has saved at the last minute from certain death by the timely intervention of a young girl from his village. Not the standard happy Andy we come to expect in our media driven good guys always win in hand world. Of course, in our world, the prince is just an ordinary men. The princess is an ordinary woman in the dragon. The dragon is just a normal pressures and stresses that life throws our way. Pact is in the real world. Sometimes the good guys lose. Sometimes the dragon eats. A princess confirms there is no happy ending. My wife and I met on a beautiful summer day. She was a student struggling to make ends meet. I was a little struggling to build a career in. A year later, we were married. We helped each other through the thick and thin. In those early years, either of us could hold a job for long. So eventually we gave up on the city and moved to a smaller town with a living with less expensive. We walked hand in hand along deserted beaches. We sat engaged into each other's eyes over Kendall. It dinners. We knew we would be together forever. We would be one of the couples to make it. The arrival of our first child in our third year of marriage was caused great excitement. We bought a house and started renovating it. When he was born, we thought that our new son, Jamie, was perfect. He filled the gap in our world that we hadn't even known existed. My wife elected to stay home with family. I continued working on. We settled into a happy family life. Two years later, we were blessed with another child, Nicholas. He was the cutest baby, and we were convinced we had the team of perfect little boys in the world. How lucky we were. We had each other. Ah, home and two beautiful Children. Then the sky cell In On his second day with us, Nicolas was flown by air ambulance to a specialist unit in the hospital. Three hours away, he was diagnosed with try Caspit atresia with atrial ventricular septal defects. Roughly translated, his heart was missing one of the four valves and had two huge holes in it. We were told he would be lucky to see his fifth birthday. The months that followed what we were waiting for him to be strong enough for surgery were among the hardest of my life. Too weak to breast feed. We bottle fed him will agree. Too weak to set from the bottle. We used a tube in his stomach. He was often back in the hospital for monitoring and we sat by helpless at night. I would lay awake wondering if you would still be with us in the morning. Shortly before Christmas, we went to the pediatric cardiology ward in Greenland Hospital in Auckland, New Zealand. We stayed in a tented in nearby campground because we couldn't afford a hotel. Our days were spent with Nicholas watching Is staff took blood samples, ran tests made life bearable. The day of his first surgery was the worst day. I can remember the hand our child over to a stranger to sign a form stating we accepted these terrible risks and to walk away. Now we we may never see him alive again is something I would wish on No one. We waited for hours and hours in the world that have lost all sounds, all colors, all meaning we couldn't talk. We couldn't eat. We couldn't think When the pagers sounded to tell us he had at last interred intensive care recovery we ran to the ward is the hounds of hell well on our tails. I'll never forget that anything are tiny baby Later on a white sheet helped in blood and iodine tubes and wires retreated from his body and a thick, blood soaked gauze pad covered the wound running from his chest around to his back and that she was pumping his blood around. Another machine was breathing for him. To me, he had been murdered with my permission and then brought back to life again by the miracles of modern surgery. We sat by his side taking turns sleeping and eating and walking outside like normal people. We watched other parents and shared their pain. We cried for the Children who didn't make it. We cried for our child, and he cried ourselves. Nicholas was one of the lucky ones, recovered from the surgery and grew stronger every day he drank from a bottle. He played happily in his crib on the floor. They went home. Many things happened when state feels a sort of hand. For one thing, we discovered who our real friends were. Something else happens to. There is a huge amount of pain, fear and guilt experience. It's okay when I was living it, somehow I get into the strength needed to get by. But that strength is on credit, and someday the bill has to be paid. Different people, paper this in different ways. I got angry. I cried. I yelled Iran and clam and chopped firewood with the next, I gradually came to realize that this is okay. I'm allowed to feel angry, sad and guilty. I think that perhaps my wife paid in a different way. Somehow somewhere, a rift developed between us that neither of us knew how to Bridget. In hindsight, I think it had probably been here for a while, but the stresses and strains of family life, financial burdens and the hospital experiences were forcing it ever wider. The dragon was coming. We fought back in the following here and managed the great regain and nearly normal life. Sure, there were a weekly hospital business, but I found a new job. But things were fairly stable when the second surgery came. Nicholas took longer to recover, this time with some complications after the surgery, slowing his progress. But we were home again. The wrist was back and it was wider than ever. We just didn't have the strength to support each other. It seems all we could do to keep going every day, all we could be what to keep going. Every day I paid more off my credit by yelling, crying, burning My life seemed to handle it much better than I. Somehow, the magic that we once had baited the candlelight dinners for a few and far between on the walks on the beach were filled with conversations about money, hospitals and work. Isn't it funny how you forget about the dragon for us. The dragon came slowly, hiding behind feelings of guilt, depression, anger and helplessness. The whispers, her of a life without the burden of marriage. Whisper to me that the good days would surely return. Beguiled me with help in the sure knowledge that if I just tried hard enough, I could defeat it. But told her that nothing would ever be the same again. So why bother trying to save the day relationship? It disguised itself in the form of one of my friends and my wife turned to for support and his arm she layer for comfort while I slept alone. To read the full day, you'll have to turn to page 85 to 89 in the heart of a father. And that concludes this episode of heart to heart. Madonna, please come back next week when our show will be called non cardiac health issues for survivors with complex congenital heart defects. Until then, please find a lot like a Facebook. Check out our website heart to heart with Diana and our new cafe press boutique. And remember, my friends, you are not alone.

spk_1:   52:06
Thank 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.

spk_2:   52:28
Welcome back, friends. And thanks for listening to Today show that dealt with relationships and was called how parents relationships are affected by having a child with a heart defect. This was the 11th episode of Season One, and it originally aired on January 21st 2000 and 14. I'm very happy to say that Brenda Vignal Rowley has decided to join us today for this live portion. Welcome to the show, Brenda. Thank you,

spk_5:   52:56
Anna. Nice to talk to you again.

spk_2:   52:59
I know I always love talking to year. And if any of our listeners want to talk, they can call in at 646 200 for 809 If you have a question for Brenda, if you have a question for me, that's the number two cause 646 200 for 809 But when I invited Brenda back on, I invite all of my guests to come back on. Since where? Re introducing these programs. Teoh, our new network, which is all of talk radio, and I invited everybody to think about if there was something they wanted to talk about, but we just didn't have enough time to talk about last time. And Brenda told me that she definitely thought of something that

spk_5:   53:38
she would like to address. So,

spk_2:   53:39
Brenda, the floor is

spk_5:   53:40
yours. He says if they do. Yeah, but I wanted to say, Well, what I wanted to do was actually give a shout out to all those wonderful nurses out there in the icy use on and just in the nursery who take care of our Children. It was a nurse that actually found my daughter. Jessica's heart conditions are knew that she had a problem going on and brought it to the attention of my doctor. We were getting ready to be sent home. And, um, she has something wasn't right. And she came into my room and explained to me that she was going to talk to my doctor because something something was concerning. Tow her, and what it was was the color of the bottom of Jesse seat. And her breathing also was very, very labored. And I was again. I was having problems trying toe feed her. She wasn't able to nurse or anything like that in in the hospital. So, um, my doctor, it was shortly after that I heard them talking out in the hallway and he came in and sure enough that that's what really got going. And he called, you know, U C L. A. And set everything up and got her in there. I don't feel that, you know, it's hard to say that I'm not even sure Justin would be here today if it wasn't for that nurse. And I wish I wish I would have gotten her name. Everything was like you had said earlier was a tailspin whenever they started happening. And I wasn't unfortunately wasn't able to get her name, but I did. They believe that she played a big role in Saving Jessica that during all of this, So So that was That was basically what I wanted to say, and just just to give all the nurses out there a big shout out because they do a wonderful job.

spk_2:   55:37
They really do. And you know, this is so amazing, Brenda. But my story is so similar to yours. It was a nurse who identified Alex's heart condition. The doctor, his pediatrician, who admitted him to the hospital thought he had cystic fibrosis and he was set up for a whole slew of test the next day because you didn't get admitted until afternoon, and it was one of the night nurses who came in and saw me holding Alex. And he was breathing so hard at that point that you could even see a cleft in his chest. And she said to me, Does he always breathe like that? And I said, Yes, only it's getting worse And my husband has been worried about

spk_5:   56:23
this since the day he was

spk_2:   56:24
warn and she said that baby has a heart or a lung problem. Um, when when did he have his X ray? And I said he's not scheduled for an X ray and she said What? She was the one who got the ball rolling. So isn't that amazing? I think there's a nurses, the these nurses who work with these kids every day, and I wasn't at a hospital that normally treats Children with hurt. I think these nurses have an intuitive sense, and my husband's a nurse. He knew the minute Alex was born, something was wrong. But since his specialty is not dealing with Children with heart defects. He couldn't put his finger on it. We just kept bringing Alex back to the hospital every other day for his 1st 10 Omar Kleier. I mean, it went on for two months. It is such a miracle that Alex

spk_5:   57:16
is with their miracle in because yeah, yeah, the same thing with Jessica. But I didn't, you know, whatever this happened, you know it just like you said. It was like a tailspin. Everything was going on. I have no idea what I did. Notice her feet. But I didn't put two and two together there. Her feet were just completely purple. And I kept trying to cover her and make her warm. And And it was whenever the nurse came in and she said, you know, and she told me straight out right there. She had a 12 year old with a heart condition, and it just seemed like the pieces all went together. You know, it just all fell into place. And because of that, and she was aware of what to look for. And she something wasn't right. I know that if it wasn't for her, I'm not so sure Jesse to be here today. So that was what I wanted to do was just give a shout out. Like I said out there to all of the wonderful nurses and staff that have dealt with it and know what to look for. And I'm sure there's been a lot of life saved because of them.

spk_2:   58:24
I agree. 100%. I think these National Nurses Day. So isn't this purposes you're giving that shadow? I know you have perfect timing, Brenda. What can I say? Not always believe Well, you're right. And I think every day we should be giving a shout out to those nurses, don't you? Because

spk_5:   58:47
I didn't know that a hard job. Yeah, I know. I couldn't do it. Yeah, they're amazing people. And so many lives have been saved Their on cue. I met many of them over the years, and they're just right out there and right on top of everything. Very few of them have I met that weren't that way. Yeah, I give a shout out to them. They do deserve their own special day. And I'm glad it's today

spk_2:   59:09
leads to, and that's a perfect way for us in this show. So thanks again for being on this show.

spk_0:   59:15
Please come back again next week for another encore presentation.