Cora's Law & Why It's Important (Remastered)

Although congenital heart defects are the number one birth defect, typically newborns have not been screened for heart defects before leaving the hospital. This has tragically led to some newborns passing away from undiagnosed congenital heart defects, sometimes in their mother’s arms. This was the case for Kristine McCormick when her seemingly healthy daughter Cora passed away in her arms. It wasn’t until Kristine received the autopsy report that she realized Cora was born with a severe, congenital heart defect. Vowing to do all in her power to prevent another mother from experiencing her pain, Kristine joined forces with Annamarie Saarinen and others to petition her state to conduct a simple, non-invasive test to detect some of the deadliest heart defects in newborns. Tune in to this episode of Heart to Heart with Anna to find out how these moms on a mission have been able to convince lawmakers to pass legislation requiring pulse oximetry for newborns and what the results have been.

Transcript

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welcome friends to heart to heart with Anna. This is your host, Anna Dworsky, and I'm very excited about today's show. Cora's Law and Why it's Important. This is the sixth episode of Season one and this show originally aired on December 19th 2013. Today's guests are Heart Mom, Kim Willis, Christine Bright McCormick and Ana Marie Cernan and Indiana Senator Brett. And we will discuss pulse ox symmetry, testing and how newborn lives can be saved with this testing. Now let's enjoy today's show and remember, my friends, you are not alone.

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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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a six part heart with Anna, a show for the congenital heart defect

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community. Our purpose is to empower members of our community with resource is support, an advocacy information, according to the Centers for Disease Control and Prevention website on pediatric genetics. Congenital heart defects account for nearly 30% of infant deaths due to birth defects in the United States. About 7200 or 18 per 10,000 babies born every year have critical congenital heart defects or C. C. H. Dietz CCC, HDs. Our court ation of the aorta. Double outlet, right ventricle de transposition of the Great arteries. Epstein Anomaly. Hyper plastic left heart syndrome interrupted a word. A car. Tch pulmonary atresia within tax septum. Single ventricle. Total anomalous pulmonary venous connection. Tetralogy of fellow Try custody atresia and drunkest a teary assis Babies with C C H. D is usually require surgery or capital er intervention. In the first year of life, CCH D's can potentially be detected using while stock symmetry screening, which is a test to determine the amount of oxygen in the blood and the pulse rate. Pulse ox symmetry screening is most likely to detect. Seven other cc HDs thes seven main screening targets are high pop Isaac left heart syndrome, pulmonary atresia with in text septum, tetralogy of fellow total anomalous pulmonary venous return transposition of the great arteries for a custody atresia and trunk is arterial sis. Other heart defects could be just a severe is a main screening targets and also require treatment soon after birth. However, pulse ox imagery screening may not detect these heart defects as consistently as a seven disorders listed as a main screening targets. The topic today affects me deeply. My son was born in 1994 were de transposition of the Great Arteries, single ventricle and a score. Other congenital heart defects. Yet he was sent home from her hospital and from newborn follow up every other day for the 1st 10 days of his life with a clean bill of health. We didn't know what about my son's heart defects at the time, but my husband and I knew something was wrong and we kept taking him back to the hospital. By the time our son CCH D's were identified, he was in congestive heart failure and very well could have died. If the simple pulse ox symmetry test would have been performed on him. He probably wouldn't have gone into congestive heart failure, and perhaps the doctors wouldn't have recommended we take our sent home to die. Dad is why our topic today is chorus law and why it's so important to discuss this topic, our guest today or Christy McCormick, Kim Willis, Annamarie Saarinen and Senator Brent Waltz. Christy McCormick states that within weeks of her daughter's death, her role became clear. She would speak for babies without a voice. She would help their mamas. Christine has been a proud advocate of newborn health since 2009. Her focus has largely been on newborn heart screening or pulse ox symmetry. She's successfully advocated for legislation in her home state of Indiana, which made Paul sex symmetry law in April 2011. She has helped other parents and other states work to make pulse ox symmetry the standard of care practice in their states, as well as through her grassroots organization, Pulse Ox Advocacy, Christie's current interest or screening for congenital heart defects before and shortly after birth, newborn screening and any issue that affects the health of infants from conception through the first year of life. Kim Willis is a 32 year old mother of three little ones. She currently works full time since sales assistant to a financial advisor. Her Children are her life. Brooklyn, nine, Ethan, seven, and Caden, 17 months, who also has hypoplastic left heart syndrome. They live in Indiana. Kim had no idea of our congenital heart defects were or that they even existed until june 15th 2012. Caden was born June 14th 2012. He seemed very healthy, and the 1st 24 hours were normal. Kim inquired a few times about his cold blue feet, but was assured that that was normal for newborns, too. It had been five years since she had had a newborn, so she accepted their answer. They were set to go home about noon, but then it was required for pulse ox symmetry screening to occur, and their plans changed. Because of the results of that test, the doctors realized something was wrong. That one test changed everyone's lives. In Kim's family, we will meet on a Marie Saarinen mother to a daughter with a congenital heart defect in Indiana. Senator Brent Well, Slater in our show. Thank you, Christine and Kim for being on the show.

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Thank you so much for having me.

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Thank you for having

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us. Okay. Good. So welcome to the show, Christine. I was wondering if you could tell us about Cora and how her life and death have changed your life.

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Thank you. And I just want to start before I get into Cora's story by again thinking you so much for doing this program and for doing the show on all the shows you've done for the congenital heart defect community. It's a great resource, so I'll dive into Chorus Story now. It's brand anniversary time now, so it's a pretty hard time because Cora was born on November 30th 2009 and I'd had a extremely healthy, normal pregnancy and I had a normal labor and delivery. Everything was great. Every doctor's appointment, which is a few moments, which is always a good thing. When you're pregnant, you know that everything's going good, and so I gave birth. You're fast forward to November 30th 2000 and nine, and she came out crying and screaming and perfect. And if you've seen her picture in which I think a lot of people listening, probably have she put the picture of good health. She was a big baby. She was nearly £9. The nurses and the doctors all gave her a clean bill of health in the hospital, and we were able to go home have 48 hours just after the newborn screening, which, of course at the time didn't include newborn heart screening in Indiana with Over, that's kind of normal where we're from. So we took her home and bundle her up on a cold December day, and for the next few days, I just enjoyed having our newborn and she she was great. Everything was perfectly abnormal, as it is to have a newborn months of late nights and little sleep. And then one morning I sat down to nurse her like I had before. My husband had been up with her. One thing. I think it's really sweet about Cora's life. She didn't spend any time alone because when I was asleep, my husband was up with her and I started a nursery. He jumped in the shower really quick and everything was fine. He got out of the shower and he walked over, and I remember him stroking her cheek and saying something like, She's so cute! And then he began to walk back to the chair. That was just a few steps away, and I just looked up just like you might look up when somebody's walking across the room, you know, just a few seconds my eyes were diverted and remember telling him that I loved him and they think he said, I love you, too. And then I looked back down and and just quite register. What I was seeing because of a newborn that had been so healthy and was given a clean bill of health was month in my arms and not breathing and a sickly gray caller, and it just didn't register right away in my mind. But it was a matter of seconds that it did and jumped up and told my husband to call 911 And I just remember him saying what? He had just touched her, too, and saw that she was fine. And so, of course, he did spring into action 9 11 But we eventually through the phone across the hall and ran out to our car because we lived in a small town called Decatur, Indiana, at the time, and we're just about five minutes away from the hospital, so we just jumped in the car. The car was frosted over, so you see, he put it head out the window to drive all the way to the hospital. And we got her there within, definitely under 10 minutes from when she stopped breathing, but probably more like five. And despite their best efforts, poor with debt. And I had no idea why. Of course I blame myself. She'd been in my arms, so I just kept on screaming. What did I do? And the doctor just gave me a funny look like we don't know what your dad like, what's going on. And then, actually, after they figured out that I was just like, what could've gone wrong, what did I do wrong? They were really compassionate, and the corner came over and we had to walk through everything. And then I you know, I was bawling as I'm walking through the scene just hours after it happened, and she called me a couple days later with the preliminary results of an autopsy. Of course, it takes quite a few months to get official autopsy, but I was so distraught she wanted to give me some kind of an answer, and she said that it was congenital heart disease, and I remember hanging up the phone and rushing over to tell me husband and just that sounds weird, but I was actually not happy, but I was just a little relieved that we had an answer. I thought we would never have an answer or that it would be something that they did, and I didn't know how he could live with myself like that. And he was the first ones like, Well, what's that I hadn't even thought about. I just okay, Something wrong with her heart. And we pulled out of the dictionary in the new answers there, and then I took to online to figure it out, and I got a whole new world. That's the first time I remember hearing that phrase was from the coroner. I threw my pregnancy. Adult, Of course, like many new mom, they read everything and get my hand blanc. That's how I would be in a new mom. I wanted to know all the information, everything that could go wrong or might go wrong, or that I needed to do and never came across it. And then from there within day, Donna Marie, who you'll hear from later, actually contacted me and was the first person who told me about public cemetery screening and how it could have saved Cora. She was already working really hard to make it standard across the country, and I think she's working across the world. So she's been a great advocate, but I heard from her within days. Of course, death and everything has just kind of grown from there. I just cannot imagine this happening to another mom. He just couldn't live with the thought that this could happen to another mom and another baby.

spk_4:   10:45
I totally understand. I'm so sorry for your loss. But I admire you for doing everything that you are doing to keep Cora story alive and to make her life in her death meaningful. I think that's one of the problem most of my bereaved friends have is that when they lose a child, they're afraid everybody's going to forget about that child a net. That child's life had no meaning, But you are in so much to make Cora a meaningful person,

spk_6:   11:12
right? And what I always say, a mother biggest instinct is to make sure your child is healthy and in this community, I know we're limited and healthy as a new kind of normal. But it's healthy and happy as you can. And when your child passes away, it's your mission to make sure your child is never forgotten, that your child lives on and makes a difference and whatever you chose to do. And I think everybody has a different path in a different route. And whatever you do, whether it's just Christmas holding a toy drive something and I think it's really meaningful, really going to anyone that's lost a child.

spk_4:   11:40
Absolutely, absolutely well, you certainly have done on lot to make us all aware of the pulse ox imagery screening. And we have Kim on with us right now. And Kim, can you tell us what role you feel? Cora's Law, played in saving your son's life,

spk_5:   11:55
feel that chorizo had a major role in saving Kagan's life. I also had a very healthy, active pregnancy. I had two sonograms during my pregnancy, and this was actually my third pregnancy. So I had read lots of books and had already had two other Children, and I had no idea what congenital heart disease waas until teams. When he went down for his newborn screening and he didn't pass the pulse ox, he had a 30% difference between his hand and a foot. So before I knew anything, they had already done an echo and Bennett to ST Vincent. But there's not a day that goes by that we're not thankful for all of her work and records law because our story could have very well been different if it wasn't for that.

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Absolutely. Did it seem surreal to you that I actually had a mate for her defense, considering you had to help Children and that he was normal after birth?

spk_5:   12:53
Yes, Very, very. It was unbelievable to me. I remember everything was a blur in the Nikki that day. By the time I seen him, they had already started him on I. V s. And I had no idea that there was anything wrong with name. He seems so healthy. He was £9.4 ounces and he had no distress after birth. I had already taken care of him for the 1st 24 hours, and I remember after the transport team left with him to take him to Indianapolis, we went home together a couple of our things because we had no idea if it was going to be like a week for us to stay up there a month. I remember begging my niece, So let me take the car seat because I was convinced that this wasn't really happening and that

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when we

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got up there, they would assure me that he was fine and we would get a taking home. But he is up there for six weeks after his first surgery.

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Wow, That's quite a change for you to think that you're taking a healthy baby home and then all of a sudden to be wished away to another hospital. And they're not to come home for six weeks. Well, can you tell us how Caden is doing now?

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Payton is terrific. He is almost 18 months. So he is walking and climbing into everything. Everybody always tells us. They would have no idea if we wouldn't tell them about his health problems. He looks perfectly fine. He's a big baby. £24. So he

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has

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been excellent.

spk_4:   14:14
Yeah. What

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a

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big, healthy boy. That Dallas. I'm sure that helped him recover from the Norwood as well as he did, too. Because they like to have the babies. They can help me. It's much harder when they're creamy sized.

spk_5:   14:27
I think it seems that he was the biggest baby that they had ever did the Norwood operation on.

spk_4:   14:32
Wow. So have you met Christine before?

spk_5:   14:37
No, not in person. I've talked to her several times. We've been at the same events, I believe, like the heart walk. I've never actually personally met her.

spk_4:   14:44
But now you get to meet her on the radio wear.

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Thank you for everything you do. There's not a day that goes by that we do not think about you and Cora. Thank you so much and just gonna cry. Some women

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stop talking, but this is why I mean, I do what I do. So coral is on. But ultimately I do what I do

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because I just can imagine you're not having Kate. And as

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the first baby that I ever knew have saved. It was a month to the day that

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the wall when in fact may I got the chance to hold him and just couldn't take my eyes off of him knowing that he was here. And I'm just so glad that things worked

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out so well for you in for Kate and for your

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entire family. Yes, Thank you so much. We're very thankful.

spk_4:   15:28
Well, I knew we were also gonna cry during this epicenter. Definitely

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had tears in my eyes

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as Kim was talking.

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It's amazing what one little girl has been able to help do. As far as bringing awareness to this topic. I want to thank you so much Christine and Kim for sharing your story and for helping us to see why Cora's law is so important and how it's affected your lives. Now it's time for a commercial break, but don't leave yet. Coming up, we have another mother of a child with a congenital heart defect. Find out how this mom on a mission started a campaign that would be picked up all across the United States. Find out how and why she did it when we returned to heart to heart. With Danner.

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Anna Dworsky has written several books to empower the congenital heart defect, or CHD community. These books could be found at amazon dot com or at her Web site, 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 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 and information about advocacy groups as well as read Ana's Weakly plug. Anna wants you to stay well connected and participate in the C H D community. Visit Heart to Heart with anna dot com. Today

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you

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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 Ana at heart to heart with anna dot com Now back to heart to heart with Anna

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Heart to Heart With Anna, a show for the

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congenital heart defect community. Today we're talking with Christy McCormick, Him, Wallace, Ana Marie Saarinen and Indiana Senator Brent Waltz. We just finished talking with Christy McCormick and Kim Wallace about how chorus law came to be and how it has already saved the life of Kim's youngest child, Caden. Now we will turn our attention toe on Emory Saarinen. Late on a cold December Minnesota night in 2009 on a Marie stumbled across the block post, asking for readers to wear pink in honor of a little girl named Cora. She snatched her baby out of her crib and took a photo of her. She had stumbled across the block while searching for other families, stealing with congenital heart defects. Her daughter had been born just six months prior. An auto Marie's experience of discovering her daughter's heart defect after birth transformed her into an advocate for families whose babies were not diagnosed in utero. She read about a screening method for newborn heart defects and decided to help coordinate a pilot program for pulse ox symmetry. Screening of newborns at University of Minnesota Amplats Children's Hospital. She sent Kristina photo and a note about her newborn screening plan, and she continued telling Cristina about how important chorus store Iwas and how hard she was working to prevent other families from experiencing chorus. Fate will mate Indiana Senator Brent Wall soon our next segment, So welcome to heart to heart with Anna Ana Marie. Thanks for having me. Well, I'm so happy to have you on the show. It seems to me that your experience was very similar to Christine's and Kim's and that your daughter's heart defect was not diagnosed in utero. Can you tell us about your daughter's birth? And what Trent, until the point of her diagnosis

spk_8:   19:48
sure is fairly similar in that it had a rather uneventful pregnancy thing. That very well. I was sort of a high risk mother. That might be a little bit different because I was 40 years old, so I had had several level two ultrasounds which mean they're special ultrasounds that take a very close look at the heart around the 20 week period, but one slightly later, one slightly earlier and goes, Given all the assurances that everything checked out looked great. So he had a beautiful little girl that we were ready to bring home the third day, and the rounding pediatrician had heard the murmur Monday to that, we were sort of given some reassurances that they were very common in newborns, and indeed, they are very common in newborns. It's part of the transitional circulation that babies have from coming out of the tummy and breathing air. But checking that at the one week well visit was sort of the standard protocol, and that's what we were aiming to do. But as it turns out, there was an echo cart so large echocardiogram machine that's brought between hospitals between the community hospitals where I live and the larger Economic Health Center in Minneapolis that has been at that community hospital earlier that day to evaluate another baby, so to do an echocardiogram and another baby. And the pediatrician had heard about that. So just as a precaution, she thought, Oh, well, it's here. The tech is here. Let's have a quick look at this little baby, and that way I could go home with peace of mind and we're all good, and that's sort of how we went into the echo with her. And an hour later there was a cardiologists standing in our doorway telling us that our baby was in profound heart failure and needed to be moved to a nice see you immediately.

spk_4:   21:29
Wow! Wow. So everything seemed to happen so fast. What was her diagnosis?

spk_8:   21:36
Well, in those first hours, the best diagnosis we could get is heart failure. I mean, they didn't know specifically why she was in heart failure. They just knew there was something not working right. The blood was flowing between the two chambers, upper and lower chamber, the way it shouldn't be. And her heart was by X ray about three times the size it should have been. So we're talking about £6.9 ounce favor. She was a little bit smaller than my other Children, and that heart is about the size of a walnut, maybe even slightly smaller than that. So it's very tiny. But seeing how much of her chest cavity that it was taking up even at 48 hours when they took the X ray was startling. I still have the X ray to this day, and it's a shocking thing to look at when I put it in presentations and such, but it would take many days, actually, in the nick you before we got a formal diagnosis, even after that, kept evolving a little bit. Ultimately, what it ended up being was severe mitral valve regurgitation, which means she had a defective mitral valve. It wouldn't open and close properly. So that's why that blood kept flowing kind of loosely between upper lower chamber. And then she at one week old, was diagnosed with something called Wolff Parkinson White Syndrome, which causes sort of spontaneous tecca cardia. So it's the same as an adult. You say Tech a card Ia's. It's when the heart rate is very elevated in a baby, they call it S P T. A super ventricular tecca cardia, where the heart rate will just jump from what's a normal rhythm to about 300 beats. A minute's almost like a hummingbird, and they'll need to shock it back into rhythm. So at its worst, that was happening about 24 times a day, and that was obviously making her defective mitral valve even worse of situation than it might have been without it. But either way, she would have been dead within days of being discharged from the hospital.

spk_4:   23:18
Wow. So did she have surgery within days of birth? Instead, she did

spk_8:   23:24
not. We were very prepared to do that. However, after she was transported to the first hospital which had the neonatal intensive care unit at the point at which that tech a cardio kicked in, they transferred us across the river at the time to what was the Children's Hospital. We now have it all on one campus here. That happened about a year after Eve, his experience, but that Then we had to move for a second time, which was also really a difficult transport. Even though it was only 15 minutes away, she started having seizures. I mean, just prepping these tiny babies for transporters, a very difficult thing, Which is why one of the pieces of what I work on is so much into early detection in the right detection, so that you can reduce unnecessary transports but ensure that baby's air brought where they need to go on the first pass. At other instances, so but in this case, we were being moved so that she could be very near the surgeon, which was important at that time because she may not have made it through that weekend. So unfortunately, she did, and we worlds it keep her heart functioning on a cocktail of about nine different medications for about a two month period before those started just not being effective anymore. And we knew we needed to get her on the surgical calendar. So at about three and 1/2 months of age, then she had the first surgery for a blading, that electrical pathway that was causing the arrhythmia and then five days later, had her open heart surgery as three and half months old.

spk_4:   24:45
So is it Eve that you took the picture of when you read about Cora warning for people to wear pink?

spk_8:   24:52
Yes, yes, of course. She was already in bed. It was quite late that night, and I remember going upstairs to grab her out of her crib, which normally I would never do is wake a sleeping baby. But I felt really compelled to show my support for Christie and recognize her loss. It's just so profound that because this is a preventable lost, and I couldn't imagine what she was going through, and we didn't know that four years ago that would start a long friendship and an alliance working on this important issue. I have so much respect for her.

spk_4:   25:25
Well, you've looked absolutely beautiful in that photo. You did a wonderful job. Did you have any idea that that photo would become like Corey's voice?

spk_8:   25:35
Well, it certainly hasn't to the degree that beautiful pink ribbon photo of Cora has. But between Christine and I, every year we commemorate the start of our friendship and our work. I think with that photo, and of course, I had no idea. And there were many, many photos being posted at that time to support what would become a local national and now international effort to ensure that no baby leaves the hospital with undiagnosed heart disease and that no mother finds out about a congenital heart defect from the corner the way Christine did.

spk_4:   26:09
Well, I totally commend you on everything that you're doing. It looked like you were working on this kind of activity even before you found out about Cora is actually

spk_8:   26:19
Oh, yes, we started just a couple of months after Eve's surgery. So in the summer of 2009 our pilot team was being put together with the hospital. So the clinicians there and then the Minnesota Department of Health. So was the first pilot ever launched in conjunction with the State Department of Hell to explore this as a population health screening tool. So to start gathering data probing efficacy around the screening. And we were just kind of in the starting movements of that and probably about a month before I met Christine is when I presented to the state Department of Health and met the person who served on the federal advisory committee to the secretary of Health and Human Service is that recommends all newborn screenings. And we got the sort of ball in motion to make a nomination, which happened in January of 2010 to add congenital heart disease to the panel of which all newborns are screened.

spk_4:   27:17
Well, thank you for being such a strong advocate for that movement. I know that when I saw how pulse ox imagery could have possibly prevented Alex from going into congestive heart failure, I was amazed that a simple, inexpensive test like that could have been done on him and prevented him from having his heart completely fill his chest just like it sounds like Eve did. And so I started to lobby in Texas, a swell and luckily for us, just like Indiana, Texas also now has a law to have newborns in Texas screen. So I commend you. I hope we can make this a federal law. But isn't it exciting to think we could go international with this?

spk_8:   27:56
Yeah, it's been really exciting. I mean, the U. S R process is a little bit different. We have these federal recommendations and then still require state by state implementation. So it's a lot of work, but by policy standards, it's really moving quite quickly. I mean, by the middle of this year, you should know that well jumped from 30% of the newborns in this country being screened to well over 75% and the remaining 25% that'll happen. It's it's just it's Sometimes it takes another years. Sometimes it takes 24 months, but in terms of a full scale implementation, it's gone pretty quickly and then understanding globally that just in the time that we've been talking this hour that 150 more babies are being born with congenital heart disease, and earlier we can detect that disease and help them, the better their outcome. So it truly is a movement that has a lot of strength behind it. And thanks to a bunch of people working together, yourself included, good things are happening.

spk_4:   28:54
Well, they give some much. Ana Marie. It's been quite an experience just listening to you and what she went through with Eve, but also how you've turned around, befriended Christine and how you're keeping course story alive with the work that you're doing. I wanna thank you so much for coming on the show and for sharing your experiences, and unfortunately, it's time for us to stop and take a break for a commercial. But don't go far. Stay tuned because you'll find out how one little baby affected a senator's heart and how he not only became an advocate for newborn screening, but how he also put a name to a new law that has a chance to save countless lives. When we returned to heart to heart with

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Donna Way hot industry, we're offering us a mechanical hot, and he said, now that I've had enough to give it to someone who's worthy. My father promised me a golden dressed world 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.

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Heart to heart With Michael Please join us every Thursday at noon, Eastern as we talked with people from around the world who have experienced those most difficult moments 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 from this CD are actually going to help those with congenital heart defects join Music Home tonight forever. Look,

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you

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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 ANA at heart to heart with anna dot com. Now back to heart to heart with Anna

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That's our show. Heart

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to Heart With Anna, a show for the congenital heart defect community Today we're talking with Christy McCormick, Kim Wallace on a Marie Saw Roman and Indiana Senator Branch Waltz. We've heard the stories of three mothers who have experienced what it's like to have a child born expecting a perfectly healthy baby, only to be told otherwise. In Christine's case and news came after autopsy. Kim, then on Marie's Children, were spared Koris fate when their birth defects were revealed in time for the baby's tohave lifesaving heart surgery. Now we'll meet a man who doesn't have a child with a heart defect but who has a heart of gold himself. Brent Waltz is an Indiana state senator and Indianapolis businessman. He represents Southern Marion County in northern Johnson County, which comprised of 36 Senate District of Indiana. Following his defeat of Senate finance chairman, Blair reports in a 2000 and four Republican primary election. His investment banking company, the Baron Group Inc. Specializes in mergers, acquisitions, a capitalization of small to midsize private companies in the transportation and manufacturing industries. Senator Walls achieved one of the greatest upsets in Indiana political history when he defeated 36 year incumbent and sent it finance chairman Larry Boards. Sports was one of the most powerful Indiana politicians of the 21st century. Senator Walsh defeated Boards by 38 votes in the 2004 Republican primary and then easily defeated his Democratic opponent in the November 2004 election and was re elected to a second term in 2008. Subsequently, in 2012 he won reelection for third term. Welcome to heart to heart with Anna Senator Waltz

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Anna. It's a pleasure to be here. Thank you for having us.

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It's definitely my owner toe. Have all of you on today. Can you tell us how you first found out about chorus Story and why it seemed to touch you?

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Absolutely. I give Christine all the credit for everything that has happened over these last few years when it comes to the Indiana legislation that was passed. I received hundreds of letters over the course of a year from constituents, and they range from the mundane to, you know, fairly controversial topics from time to time. But I don't remember ever receiving a letter that really touched me in the same way that Christine's did. In this letter, she recounted the death of her daughter, Cora, and the death of a child under any circumstances is tragic. And I would think that many people who are faced with that type of situation would be so devastated and so wracked with grief that they would just draw upon themselves and turn inward Christine to just the opposite. She looked out and thought that this was something that needed to happen. Paul Sock Cemetery screening that would protect the lives of hundreds if not thousands of who's your Children who might otherwise be placed at risk and die in the years ahead. And she did not want Cora's lost to be in vain. So she advocated both with me, which obviously I agree to immediately and then with other lawmakers in both the House and the Senate of the state of Indiana. And we got this law passed cores law, and what this essentially does is mandate pulse ox symmetry screening occur for all newborns born in the state of Indiana. That's a very inexpensive test and of course, saves lives and I've calculated somewhere between 30 to 50 Hoosiers are alive today as a result of Christine's efforts and to play a small role in making that happen is certainly my greatest legislative achievement. Justin are to have played a small role in this process.

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Well, it's amazing to me that you can already calculate the number of lives that have been saved by this law that must make It feels so good, because I'm sure it's all make or a lot of times you're putting into law Sausage Day or

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E. I

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mean one of these things where someone thinks that someone's taxes are not high enough for someone, things their taxes are too high or there needs to be a law governing trash pickup. Things of this sort. I'm not saying those issues aren't important because they are. But they pale in comparison to life and death situations like the one core faced and Christine faced and dozens of Hoosiers face every day. We had a situation, actually, as we were starting to lobby for this issue, we had a senator Ron Grooms from southern Indiana, who's grandchild actually had a heart defect. He's a pharmacist and the child had been home maybe 3 to 4 weeks and was just not behaving normally. And his medical profession and training taught him to take a child to the emergency room, which the defect was able to be quickly identified. But had they not had that medical background heading up in a pharmacist, certainly, he says, it could very easily have been missed, and his own grandchild could have died with that. And so now we're fixing that in Indiana, and I'm grateful that other states are taking up this fight as well. And we're making great progress nationally on this important issue.

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And did We are, And it's thanks to people like you who are stepping up in letting people know how important this is. So what role do you think parents play in persuading their lawmakers to create laws for our smallest and voiceless citizens?

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Well, I don't have a medical background, and so prior to studying this issue, I would not have known what pulse ox, symmetry, waas, and so education becomes very important. I would not have taken up this fight really out of ignorance more than anything else. Had Christine not taken the time to educate me on the importance of this issue and sharing with me her story and the fact that it would impact dozens hundreds of Hoosiers in the months and years after she shared her. Her tragedy and the fact that she was able to take this tragic situation of her family and turn it into a triumph is really a testament to her strength. I give her all the credit for her leadership on this important issue.

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Well, I think it's important for us parents to know that when we send letters to our lawmakers, they actually get red. I'm so impressed that this letter personally touched you,

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you know, when you win by 38 votes, which was my margin 6062 to 6024. Who keeps track of those things right?

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But

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I learned very early on that every vote counts, every citizen counts. And that experience, as challenging as it was from a political context, of course, is not even worth mentioning in comparison to the struggles that Christine and her family obviously undertook. But it did teach me that people are important and the will of your constituency is vital not only to be able to do an effective job as a lawmaker, but also to make sure that tragedies that could happen do not happen. And so I'm just grateful for having had this story shared with me and be in a position to actually do something about it.

spk_4:   38:01
Well, I want to thank you for what you have done for being a champion for this, cause it's not a federal law yet. And as we heard from Ana Marie, this is something that has to be done at each state level. Unlucky. I live in a state where that has already occurred. But what can our parents who live in states or countries that don't have this as a law yet? What do you recommend? Day, too, So that their area hospitals will also be testing for heart defects right after babies are born.

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I would recommend doing exactly what Christine did. Call your congressman. Call your senator. Call your state senator. Call your state representative. Call your governor. Share your stories. Share your concerns. This is a very simple test. It costs essentially the price of the medical tape wrapped around the child's finger. It's a few dollars and well, save and has saved lives many lives, and obviously the more states to do this. The more babies that have access to this test, the more lives will be saved. And so, being able to contact your lawmakers, express your interest. Your concern share with success stories about Children who are alive today as a result of brave men and women having educated lawmakers the years passed and taking up that fight for the years in the future.

spk_4:   39:17
That's wonderful advice. Thank you for empowering or community with your tremendous words. I really appreciate that. And thank you, Senator Waltz. I do appreciate you giving us your time today.

spk_7:   39:28
Well, it's an honor. Thank you so much for having me.

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Well, now it's time for another commercial break. But don't leave yet. It's almost time for a miracle moment when we return

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Heart 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 CHD 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.

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You

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are listening to heart to heart with Anna now back to heart to heart with Anna

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back to our show Heart to Heart with Anna, a show for the congenital heart defect

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community. Our purpose is to empower members of our community with resource is support an advocacy information. I want to take another moment to thank my guests today. Christine McCormick, Kim Willis on a Marie Solomon and Senator Brent Waltz. This is a very emotional topic as many of you experiences. You were listening to this. I think many of us had tears in her eyes knowing that families could lose Children. But it's even more important to realize that Children can be saved thanks to this one simple test. The pulse ox imagery test and Senator Walsh just told us all how we can make it happen in your communities. We need to, right, we need to call. We need to stand up and speak out for those babies who can't speak out for themselves and it can be done. So now, for our miracle moment. Today's miracle moment comes from an Internet website, Yahoo Health. This Day and Health article was written by a Lisa Call Your Cool and was published on October 15th 2013 she writes. 24 hours after Cole Anthony was born in a Seattle Washington hospital, a $6 newborn screening tests revealed that the seemingly healthy baby boy had a potentially fatal heart defect. Cole was rushed to the neonatal intensive care unit for treatment, where doctors advised open heart surgery during the anxious days before the operation, his mom, Rochelle, wrote in her blawg. I often sit in silence with cold, studying every breath. He breathes every hair on his head. I tried to imprint in my mind. Every frown and smile he makes. Ads were shell. I sometimes rushed to his credit in the middle of the night to see if he's breathing, terrified to find him lifeless. Although the adorable baby boy, now five months old, is doing well after the operation, the fear of losing him will never go away, says his mom in 17 States, Cole might have missed out on that newborn screening test known as Paul Issac Symmetry, or Pulse ox, which is not legally required in those states, even though it's been recommended by the American Academy of Pediatrics, the American Heart Association and U. S. Health and Human Services since 2000 and 11. I thank God every day he wakes up and I see his precious face where, Shell says, I also thank God for the pulse ox screening that saved my baby's life and has given him a chance to live and be repaired. What about Cole still has episodes in which his skin temporarily turns purple and dusky. He's otherwise thriving, she adds. My little man is a fighter. This screening, which is on the government's recommended panel of newborn tests, add $6.28 to the cost of newborn care, according to a 2012 study published in pediatrics and checks for congenital heart defects, the most common birth defect in infants. The test involves wrapping an adhesive strips a more toe, a bandaid attached to a sensor around a baby's hand or foot to measure the percent of oxygen in the blood well below normal level could be a warning sign of a heart defects is Dr Ian Are Holtzman, chief of newborn medicine at the Mount Sinai Medical Center. Maybe as many as 40% of babies with critical congenital heart disease are not detected during the first days after birth, when they are undergoing normal testing in the newborn nursery, Dr Gerard Morton, a pediatric cardiologists with the Center for Heart, Lung and Kidney Disease at Children's National Medical Center, told W T O. P News. The PDR Trick study estimates that universal screening would have identified an additional 1189 American babies with this potentially life threatening condition and prevent 20 deaths a year. Babies with critical congenital heart disease, or C, C, H D, typically appear healthy during a few days or even weeks of their lives without early detection and treatment, says Dr Holtzman. Ah, week or two after birth, babies with C C H D typically turn blue and develop such symptoms as rapid breathing or being unable to breathe, then swallow at the same time during feedings. That's when they're rushed back to the hospital. By then, however, the baby has often suffered brain or heart damage, making treatment more difficult. At's Dr Holtzman. If this condition isn't caught in treated within the first week of life, these babies are often at risk for serious lifelong complications or may not survive. While prenatal ultrasounds can often detect this condition was show reports that she had several during her pregnancy and was always told that her son was fine. Cole was also given a clean bill of health after his birth. Adds the mom, who was signing hospital discharge papers on May 18th the day after Cole was born, when he had the screening, says the precaution before going home is required by law in her home state of Washington, Although polls tox screening isn't legally required in New York, where Dr Holtzman practices earlier this year, Mount Sinai started giving every newborn the test at no extra cost. The adhesive strip cost less than the dollar, and the screening only takes 10 minutes of a nurse's time, so it's an extremely cost effective and accurate test. Every hospital in America has the right technology to do pulse ox screening, whether it's commonly used to check babies who do have symptoms adds doctor husband, who recommends that parents asked for the screening if it's not offered as part of the routine newborn wellness check at the hospital where the baby is born. The only downside of the test is that in less than 1% of cases, the test may have an abnormal result when the baby is actually healthy. That could mean that the infant would undergo additional testing, such as heart echocardiogram needlessly in addition to test, while very accurate, can miss some heart defects every year. About 7200 American babies are born with C, C H D, and about 300 of them are sent home from the hospital undiagnosed, the CDC reports. Screening should be done when the baby is 24 to 48 hours old, or shortly before the baby is discharged from the newborn nursery live here. She goes home before reaching 24 hours of age. Given the potential to save lives or prevent debilitating heart or brain damage through early detection of dangerous heart problems through a $6 noninvasive screening test followed by appropriate treatment, Dr Holtzman says the benefits far outweigh the flight possibility of a false alarm. And that concludes this episode of heart to heart. With Anna. I hope you all will contact your lawmakers. You can see that Christine made a difference by contacting her senator and I believe that all of us have the power to do that as well. I hope you'll come back next week when our show will be called Snowflakes, How each heart is unique. And until then, please find a like us on Facebook. Check out our website heart to heart with Anna. And remember, my friends, you are

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not. I 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.