How to be Supportive of Someone who Has Lost a Child

In this episode, Michael sits down with Kristine Brite McCormick, mom to Cora, who died at only five days old of an undiagnosed CHD. Kristine talks about her ebooklet, "When Your Friend's Baby Dies" as well as ways to find happiness during the holiday season. Kristine has also advocated for "Cora's Law" which mandates hospitals to conduct heart defect screening in newborn children.

Transcript

spk_1:   0:03
welcome Hart are with Michael Future in your host Michael. Even our program is designed to empower the bereaved, communicate with information and stories from those who have suffered the most terrible loss. Michael, himself a bereaved father, will be meeting with people from around the world to share and to draw hope from their experiences. And now here is Michael even.

spk_0:   0:27
Welcome to the 12th episode of the first season of Heart to Heart with Michael Program for the bereaved community. Our purpose is to empower a community with resource is support and advocacy information. Today's show is how to be supportive of someone who has lost a child. And here with us to discuss this topic is Christine Bright McCormick, Christina's mom, Tecora, who passed away five days old oven undetected. Congenital heart defect. Since Cora's death, Christine has advocated for newborn heart defect screening and written about her grief journey. In blog's, Cora's story has been shared in a variety of platforms, from federal advisory committees to popular parenting sites. She wrote the booklet When Your Friend's Baby dies as a resource for friends and family supporting apparent after the loss of a baby she lives in Indiana with her husband and three dogs. Welcome, Christine.

spk_2:   1:16
Thank you. Thank you so much for having me

spk_0:   1:18
tell us about Cora and why you decided to write a book to help others after your loss.

spk_2:   1:23
Where, um she was perfect, you know, for five days. So I think you just have to start there, you know? So she'll always be remembered as this perfect little little baby, you know, and I'll start kind of my pregnancy kit. That's more where her story starts. Found out. I was pregnant. Everything went great. Ultrasound was fine. She was born. She was almost just shy of £9 looked. Hopefully it's gonna be, um no problems. Nothing came up. We took her home, and the third day, we had her home when she was five. Going on six days old. She died suddenly when I was feeding our rushed her to the hospital.

spk_0:   2:03
No, warhead, nothing.

spk_2:   2:05
No, nothing. I mean, I just looked down and, um, maybe was covered and on blood, um, and wasn't breathing and was great and limbs. So I shouted and my husband to call the ambulance and we just religion a small town about 02 miles from the hospital. Probably not. Even so, we just hop in the car. It was winter. Something has been actually drove with his head out the window because of the windows were all frosted over and just sped to the hospital. Um, and we had no idea at this point, you know, he was up with me. And so he saw, like, you know, what had happened and then, um shouldn't may get. And a few days later, the corner called us with the preliminary results that she had something called a congenital heart defect. And even though I'm an educated person, I'd never heard of that. They just opened the dictionary and was like, well, congenital born with. So she had a heart defect. She was, you know, born with and try to piece it together from there. We got the final autopsy a little bit later. Um, and by that time, we'd connected with some other people in this congenital heart defect world and learned a little bit. Maur Um and I couldn't just dove into it because I was just so blindsided. I think anybody who gets the diagnosis that some time has some form of being blindsided. It wasn't unique. It was just different for me and our experience in our story,

spk_0:   3:26
I can tell you that. I think as far as I know from everybody else in the congenital heart defect world, the first thing we did was we hit the books. By the time my daughter was born, it was Google was in its infancy. But everybody hit Google or the books did exactly the same thing You didn't. We were also thrust into this whole new planet that we had no idea anything about

spk_2:   3:47
right. And even after your child dies, you still want to parent that. I mean, me knowing about CHD did nothing for at that point, but it might have done something for another baby, another family. And that was the only way that I really could still parent her and be apparent, be connected to her. And that was kind of where a lot of my adequacy journey started.

spk_0:   4:06
Tell me a little about the nature of the book, how you wrote it and who it's for it. How did you distribute it?

spk_2:   4:11
It was a smaller project of mine, but it from that's really found been found helpful by starting groups of people I just found. I felt unsupported and again going back to just wanting to help other people with what I would, Um, and being a writer, I just really pounded it out pretty faster. Was staying with my husband's grandma on there was in Florida and just all alone just had time to just write, and I wanted to finish the product in that time. So I decided just a short e booklet format was the best, because when somebody has lost a child a lot of time, you needed information fast and quick and you don't have time to read a novel. So I just wanted something that they could, um, digest quickly. And after I wrote it, I put it on Amazon and a CZ, much as I can. I put on for free because it's definitely wasn't a get rich quick scheme to write the book, and that's a great great waiting for the word and to get it off their Maura. Then I've given people in different support groups permission to printer now as a whole. Um, I don't mind, though. You know, you could e mail me for the pdf version because it's a little easier to do it that way. So very now it's available on Kindle is not a real hard copy and any format. It's just er like Anne Copy like, But you could print off on PDF

spk_0:   5:33
as a guest on heart to Heart With Anna, you talked about working with Senator to help pass chorus law. What is cores love for those of us who really don't know. And what was it like working with a lawmaker to help other families like your own

spk_2:   5:45
right? So a few months after core past, wear me even within weeks I was. Your first question is, what could have prevented this? I mean, this had been preventable the same some way. I learned about a really simple screening called Paszek Cemetery Screening, which most of your listeners, if you're huge to community, you're going to know what those are all about. At the time, the advocacy for that type of screening was kind of in its infancy, but there are a lot of people doing a lot of really great work. It was really ramping up, and I connected with some of those other parents and other States and doctors and advocates who were on this journey, and it had gone

spk_3:   6:24
in front of a federal

spk_2:   6:25
advisory committee for inclusion in the newborn screening panel. And it hasn't been approved yet, but we had what we had a good amount of data about this. So I wrote one of the researchers in England and really got into the nuts and the bolts to make sure that this was something that was working and itwas I mean, of course, as we all know now, it doesn't find every CHD, but it's kind of I always think of screening and detection as like a prawn. You know, there's a pulse like symmetry screening. There's less science, and sometimes there's a course ultrasound, Um, and and then, ah, nurses, um, at the bedside, you know, doing some of

spk_0:   7:03
listening to the

spk_2:   7:03
heart and things like that. So I found out this This could close a gap in important diagnostic gap of babies, like possibly like Cora, you know, going back. You never know for sure that it could have found her too huge to you. We can't go back in time and know that for sure. So taking all that at. I first wrote to my state senator, and it was a long, really a long letter and then all of the data attached. But hey, I think we need to do this, and the only way hospitals are going to start doing it and the Indiana is gonna be on the forefront is if we pass in the law, which you know is just one of the advocacy routes that you can take. But it just felt like everything to do with that time. No se had a wall. I felt like somebody had to lead the way. And at the same time, they were advocates working in another state so that the year Indiana past third wall, India, New Jersey passed through a wall and then actually went to effect first. So they started screaming First,

spk_0:   7:55
I want to be clear on this. What what kind of screening will be doing because after my daughter was born, they said, if you have more Children will screen more, in other words, until you have a child with a C H. D. They don't screen because they say it's expensive and there's no real reason to, In fact, with the regular screening with the regular checkups that she had. They saw the heart. They heard the heart. But it wasn't a cardiologists who was doing it. It was an O. B. G. Ryan, and he saw four chambers and beating and said, Muscled up Everything's fine.

spk_2:   8:24
Public cemetery screening is John at the bedside in the hospital around 24 hours. A berth on the new word, Um, and it costs just a few dollars. Not expensive. Just a few minutes of the nurses time and they take. They put the pulse ox on the and this has been a while because that's the other thing. I've kind of step back from Abasi. They put it off and a hand and that because the difference between the two can mean something and then, of course, you know if it's under like 95 a, that's red flag. If it's like under like 93 is like whoa, red flag and then that. I mean, it's a screening, so it doesn't tell you anything that doesn't tell you your child has a C H e e. It's like no green really tells you. You got anything in it, then you want we're test. I want I

spk_0:   9:05
want to cut in here also because in the case of my daughter, she had too much blood running through the pulmonary artery into her lungs, and she was actually 100. And they and they wanted to get her down before they would do anything later. But they already discovered her ch six through other means. So if she had done on Lee this test, they would have passed her.

spk_2:   9:24
And that's why we called a screening. Because it's just one of the products that I talked about earlier. And in fact, it's has seven mean targets. So seven types of it sounds like your daughter CHD. It wasn't one of the targets. It doesn't, um, find everyone. It depends on the mechanism of the horror and the defect, but it's closes like that diagnostic gap like I talked about. That brings up another point because I don't want any parent. You think? Oh, maybe we got this this screening. She's good. She turns blue a little bit. I'm not gonna even think about her heart. No, no, no, no, no. Like the signs and symptoms need to be reported. I'm

spk_0:   9:58
sorry, but we're going to tickle her break here. But when we get back, we'll be talking more about how friends can help their brief friends during the holidays.

spk_4:   10:15
Hi, I'm John Montas of NBC's hit Our Capella Show, the single and a cappella music. It takes a team to create a sound that many will enjoy, just like it'll take a team to help my good friend Miles Sweitzer, an H L. H s survivor. Let's help Miles fulfill his dream and make a big enough sound to bring awareness to congenital heart disease. Please visit him at Go Fund me dot com backwards slash the miles project Miles with the Y Again, that's go fund me dot com The Miles Project This is for Miles.

spk_1:   10:45
You are listening to heart to heart with Michael. If you have a question or comment that you would like a dressed on our program, please send an email to Michael even at Michael at heart to heart with michael dot com. Now back to heart to heart with Michael. Welcome

spk_0:   11:01
back to heart to heart with Michael. Today we're talking with Christine McCormick about how to help a friend after his or her baby has died before the break. We were talking about Cora's law and how you've written a book to help others who have lost a child. Let's start the segment by talking about what the holidays are like for you.

spk_2:   11:16
The whole days could be really up and down for me. Some years I am all about it. Let's join them. Let's put up the Christmas tree and some New Year's. I just kind of skip it. But my one thing that I would share from my experience is just to do you two do what feels right that you're here, Sarge. It's fine. Just be sad if you want to get into it. The one of the best Christmases I have ever had in my entire life was that Christmas. That was like, three weeks after she died, because it was one of the first time that I felt like it was okay to be happy. You know, it was like, okay to come out everybody. And of course, everybody was super nice to me. You know what? The time nobody's gonna bicker over me with the last piece of I know, I know. But, you know, everybody was just kind of in a movie put up like Let's not take this for granted. Let's not fight about stupid stuff. I was just laugh and have fun and because everybody was so worried about me for that. Chris Smith. Um, you know, friends, family acquaintances I love the holidays are gonna be so hard for her. I have first Holiday was great, all the rest of them. A lot of times have just been awful, just really hard. And that brings me to a runabout. People's misconceptions about grief and people are there for, you know, the first couple of months. But then years later, they kind of think she should be over at her. Let's not bring this up so she doesn't think about it When you know on anybody who's lost a child knows you're always thinking about it. Um, and it just becomes harder when dealing with other people. I I think a lot of ways.

spk_0:   12:40
What do you think it is that the holidays are special in that way that people are extra sensitive?

spk_2:   12:45
I think it just because you have so many memory moke making moments of that J where they're supposed to be there they I should be there could be there And you think of what I think for me. I think of what could be here. What should be.

spk_0:   12:55
You were talking about friends and family being nice to you. It's difficult to know how to help a friend. It's lost the child. So what are some of the things that your friends and family did? They were helpful. And what wasn't so helpful because there's a lot of this, a lot of meat met

spk_2:   13:09
right there is, and I've learned to kind of step back and be a little bit nature to give them a little more leeway, like knowing that it was really hard. But knowing that I needed a lot Maura Times two Um, I think the best thing that you can do is just kind of bliss and knowledge, because it's just this big elephant in the room. A lot of times, and just when you gonna stop and have a moment with me when you say you know, I know it must be hard today in the first year that they did that, maybe the second year a little bit, but after that they're like kind of lets of Oh, just Acknowledgments.

spk_0:   13:43
So when it's years down the line and people are sort of holding back because they think that by now you must be over it you do you want them to acknowledge? Do you want them to come and say, Hey, I know this is still a part of you.

spk_2:   13:54
I do absolutely. And I know, and especially in writing my booklet, I was very confident of the fact that everyone's a little different and, you know, that doesn't change is good. You lost the child. We're not going back the same. But, uh, I'm not

spk_1:   14:08
the

spk_2:   14:08
type. I don't need to talk about it for 10 minutes. I just want, you know ah, second, or just like to give me a little bit of breathing space or just to say, Hey, I understand if you're like, a little more flaky this week because it's a hard week for you, that school. Don't worry, I'm not gonna get upset with you, you know?

spk_0:   14:21
Well, it's holidays. Shouldn't get upset with anybody anyway. But I get it. You would hope. I know, but there's always the crazy uncle and all that, but we're not gonna go there but I I certainly understand that when you know, moments when the families and friends were more crowded together in a friendly family sort of way, Um, there's that there's that moment where somebody says, Well, you know, I really wish she were here and that that's the moment when you sort of that's the test. If you get through that moment, you're good for the rest of the day.

spk_2:   14:50
Yeah, I think so. And I just cause the type of person I am like, if that was in front of the whole family, then they would be kind of like, Oh, just let me grin and bear this. But I like it when people kind of pulled me the side. You know, just have a little little moment. You want a one on one, and then that

spk_0:   15:05
Would you recommend that to other people to do? I mean, do you give that advice? You know, Go take your friend aside and say something nice. That's part of it.

spk_2:   15:12
Yeah, I definitely think so. And then along with you know, depends on your friend is I mean, some people like to be, you know, more outgoing than me. And like to be part of the crowd. I'm an introvert. So you know your friend. You know, if they're next River and

spk_0:   15:24
I would never know that you're in trouble. I'm sorry. I just would never know

spk_2:   15:27
E You couldn't play an extrovert when I have to, but I'm very

spk_0:   15:31
interview. You're doing a good job now, So let me in that same vein of being extroverted. What helps you find joy during the holiday season? How do you get to joy

spk_2:   15:40
personally for me? And not everybody is lucky to have this. I have a niece and a nephew. I have a few needs of and nephews and that is my joy. That is my world. And I'm sure other people can relate to that. If you have more Children, I'm sure, like in some through and all the first with them and spoiling and spooling of them all season long. It's just amazing. That's that's my new joy. That's very

spk_0:   16:04
nice. Is there something else? Do you have some private time? Do you just keep the the close family together to go out?

spk_2:   16:11
We do whatever different every year, and sometimes it's like how I felt like giving is two days away, right? And my plans aren't even that solid. I like told my mom I'd be with her this year, so I it might drive up there alone, like not even with my husband and cook a turkey. This is We're moving very like we just try to be fly by the seat of our pants so we can see our kind of mood. And if Christie needs to hide from the world and read some books and watch the bad TV instead, you know, on a Christmas, then people will understand if they don't at this age that this rate eight years later, I really care what they don't understand.

spk_0:   16:47
Well, you think right now your friends knew who you are and know what you value, and I know how to read you. If this is not a year to have a party or this is a year, you would think that they would know that by now. I think you're lucky that you're surrounded, apparently by friends and family who really want to try to understand.

spk_2:   17:02
Yeah, I was just gonna say I've cut the list. It's pretty small, you know now. So it's just like you know, a few people, the friends and family who, um I trust you know me well enough that I kind of have really let it, you know? And besides, acquaintance level on who? I can play the extra vert with acquaintances. But when I really need to prone to Michelle would be me. And it's just the few wanted people who I trust that I keep her out. Now

spk_0:   17:26
we have about 1/2 a minute. So tell me something not helpful that somebody has said to you I don't know

spk_2:   17:33
where to start. Like I think everybody has get about. Sorry. Like when you gonna have more kids?

spk_0:   17:40
Oh, that's

spk_2:   17:41
what she's with God now. Okay, great. But I'm not Christian. And thus can that spooky. The list is endless. Well,

spk_0:   17:49
my two favorite ones are. So do you have any more Children? Yeah, because that really makes up for it. And my wife's former best friend is if I had a kid like yours, I'd kill myself and a right. Exactly. But guess what? With that, we're gonna move to a hard break, so I'm gonna say thank you so much for being with us and opening up and sharing your personal journey and how you're channeling your pain and helping others through your book. Cora's Law. But when we come back, we'll get some advice from Christine about specific ways to help friends who have lost a child and what results she has seen personally since Cora's

spk_3:   18:25
Lo was established 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 heart defects join Music Home Tonight Forever.

spk_5:   19:06
Heart to Heart With Michael is a presentation of Hearts, Unite the Globe and is

spk_0:   19:12
part of the Hug Podcast

spk_5:   19:13
Network Hearts Unite The Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift and power and enrich the lives of our community members. If you would like access to free resource, is pretending to the C H T community, please visit our website at www congenital heart defects dot com for information about CHD, the hospitals that treat Children with CHD summer camps for CHD survivors and much, much

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spk_1:   20:20
You are listening to heart to heart with Michael. If you or someone you know would like to be a guest on Michael's program, please email him at Michael at heart to heart with michael dot com. Now back to our program Welcome

spk_0:   20:39
Back to Heart to Heart with Michael, A program for the bereaved. We're here with Christine McCormick, who is sharing experiences with us after having lost her daughter, Cora, to an undiagnosed heart defect. We're about to conclude today's show, and we're going to find out about what Cora's laws really done in Indiana and some of the 52 ways that we can help friends who have lost a child. So we talked about cars low a little bit in Segment one. Can you tell us how Cora's law has affected people in Indiana?

spk_2:   21:05
I got an email from the senator, Senator Walsh, that I worked without. 100 babies have been detected through the screening, and that was a few years ago that I was just within like that for a few years. It just blows my mind and like again, that was just in Indiana. Within the first few years,

spk_0:   21:22
you feel like you're a mother to all those 100 babies that have been saved.

spk_2:   21:26
I do a little bit, and I'm in contact with some of them on Facebook and watching them grow up and and I've held one of them and met one of the family. It was very emotional and it was the first baby save. It was just a really emotional story because the baby lived in the middle of nowhere, the nearest hospital far away. And, uh, it would have been about outcome had the baby not been sent. Center cardiologists so soon?

spk_0:   21:51
I just think that's tremendous. Imagine that Times 50 for the rest of the country. Have you? Have you got some basic stats on how many other states have adopted this low?

spk_2:   22:01
We're at almost all The states either have a law or the other. Hospitals are screenings through some regulatory mechanism. I think there's just a few states sort of harming wagon behind, but most of their hospitals are screening, so you know there's somewhere issues to tackle, but we're getting there.

spk_0:   22:17
But that's amazing it and gives a lot of hope, I think, because a lot of people don't think about congenital heart defects until they run into it. Great. But they think about all kinds of other things that could go wrong. It's just not on their radar, and this will put it there, and I think the more they're aware of it, the more they're gonna demand screening if they don't have it. I just think in general raising winners here is automatically going to save lives, and that's that's terrific. In your book, you mentioned 52 ways people can help friends who have lost a child. Let's talk about three things that you think of the most helpful spent only three. Because you know, we only get 30 minutes. So friends that the things that friends can do to help their bereaved friends, especially during the holidays, because we're on it right now, but not just the holidays, any any, any three things that are really good because I've run into this all the time,

spk_2:   23:03
right? And there are so many ways that you don't think of what you're like, What can we do? What I've had friends who lost a baby after me and I have had moments of What do I do because it's just such a horrible situation, and the 52 number was completely arbitrary. Remember sitting from a keyboard, just pounding it out like they're things you can d'oh! And I think the 1st 1 is not to run away because people

spk_0:   23:26
have nothing

spk_2:   23:26
to hide. I had a friend who didn't contact me for six months, and then when she did actually, I think we kind of ran into each other when we ma'am back up, she said I didn't know what to say. So you said nothing in 1st 6 months and not to call her out because we're not friends. So she what was s So we're fine. But say something. Do something, be there. Um, that's number one. Number two is Ah, and this goes with number one is to spend more time listening. I had people like coming to me with problems about my daughter's death or how they were so sad. And you know that you need to go that the other way. You know, only comfort the people most affected by a situation you know, in this case would be like me and my husband, and that there is a next level like people should have come to my mom who were from the outside of that and to think about as rings of people and to only give comfort in and to dump all the problems out.

spk_0:   24:19
That's interesting, because a lot of people come to me. We also were lucky enough that we were able to donate organs and I spoke with one of the recipients. She was 66. years old or 67 years old. When she got two lungs and about a year later she called me up. I didn't know who she was, and then I realized who she was in the conversation, that every word that she was saying originated in my daughter's lungs, which was a very powerful moment on. But she came to dump because she felt horrible, that she was alive because of our tragedy, and she needed me to tell her it's okay, she said. All the social workers said it was It was okay and my rabbi said it was okay and my family said it was okay, but I needed you to tell me It's okay.

spk_2:   25:02
Wow. And I mean, that's I mean, a powerful situation run with you where I can think of where she really needed you. But I mean, some of the Monday and things people would come to me about, I just feel like I don't have time for that. Nobody got time for that. E you know the ice about if you like, kind of, you know you can break every rule, and there's exceptions to every rule in that might be one of them. That's just a powerful moment.

spk_0:   25:25
That's two things we need. One more thing to make. Three. What can you do for a friend?

spk_2:   25:30
Remember, you don't forget even years later. It's been eight years for me, and I'll always remember. And if you'll only remember her, she'll never die for a lot of beards. They love. Love it when you say your child, their child's name on Bring them into the present.

spk_0:   25:46
That's true.

spk_2:   25:46
And And don't forget, don't forget ever. And I don't think anybody could ever forget Cora or your your child either. But just remember them.

spk_0:   25:56
Well, here's our final and most difficult question. If you could go back in time and talk to yourself right after you lost Cora, what would you tell yourself?

spk_2:   26:08
It's gonna be hard. It's gonna be so so hard in ways you never, ever, ever imagined. But you're gonna make it. You're gonna make it. You know, that's so simple. But I think there are days when I needed to know that I was gonna come out the other side. So

spk_0:   26:22
that's that's, I think, really important, because at that moment we spent most of this year talking about the moment of loss. And at that moment, you really have nowhere to go.

spk_2:   26:32
I collapsed on the floor. I thought I was just gonna, like, lose my mind and going to the psych ward. And I don't like I can't describe it. It's like an indescribable moment. But my mind and brain, we're just drifting off. And I would have I might have Who knows? I might. Didn't end up, like, locked up out itself. And then I saw my husband, you know, this was at the hospital right in the middle of it and was like, I got a crap. I got to come back. I gotta be there for him. Just kind of a powerful moment. So I think I definitely needed to hear that over and over. You know, people do it here.

spk_0:   26:59
I'm going to steal another 10 seconds. Tell me about what it's like between you and a husband. I found that when I was up, my wife was down, and when she was down, I was up and they were always at opposite poles. And that was excellent because one could always catch the other. Did you have that?

spk_2:   27:14
Yeah. We've had a got a lot of good moments in a lot of good moments of support. But one issue we've run into is like we grieve differently because people grieve differently. So sometimes we don't always understand so. But we worked through that after eight years, we've gotten a lot better at it just time and talking. I

spk_0:   27:32
think that's really important. This is the sort of thing that either keeps people together or tears them apart.

spk_2:   27:37
Oh, yeah, yeah,

spk_0:   27:39
We've been lucky to stay together. I think you've been lucky. I think you really have a good handle on this. And the fact that you're able to turn that into helping other people is what makes you special. And I think that's probably one of the things that you do purposefully to remember. Cora is to keep her with you as you help other people.

spk_2:   27:58
Definitely. Like I said at the beginning, it's my weight. It continue to parent her, which is all I wanted to. D'oh!

spk_0:   28:04
Yeah, yeah, I appreciate that. And that concludes this episode of heart to heart with Michael again. I want to thank Christine McCormack for sharing with us and hope her story has brought some hope and help the others who were listening. Please join me or the heart to heart with Michael Team in PAL talk every week following our program, I'll talk to you soon. Until then, remember, it is okay to

spk_1:   28:23
breathe. Thank you again for joining us. We hope you have gained strength from listening to our program. Heart to heart with Michael can be heard every Thursday at noon Eastern time. We'll talk again next time when we'll share more stories. If you would like to continue today's discussion, please join us right after the program. In the Hug Podcast Chat Room on PAL Talk Way.

spk_0:   28:50
Hope you've enjoyed this first season of heart to heart with Michael. Please come back in January 1 will start Season two, and our theme will be a Celebration of Life will be featuring some really wonderful guests with some tremendous stories about their loved ones.