Remembering Chase

Matt Creedon is featured in this touching interview with Host Michael Liben. Matt shares what it was like to have two sons born with congenital heart defects, the surgeries they endured and how they affected the family and finally, he remembers Chase and speaks about when Chase passed away. This episode is a glowing tribute to a little boy who touched many lives.

Transcript

Michael Liben: 0:13

Welcome to the ninth episode of the Second Season of "Heart to Heart with Michael", the program for the bereaved community. Our purpose is to empower our community with resources, support and advocacy information. This season's theme is "Celebration of Life" and we feel fortunate to have Matt Creedon on the program today. Those among us who have raised children with congenital heart defects know what it's like to constantly live under the specter of death. At various times we have all looked over the abyss, and more often than not pulled back safely. Some of us have not been so lucky and have lost children to heart disease. Our program today,"Remembering Chase" takes a look at one father who lost his son to CHD and how it affected his family. Matt Creedon has two sons who were born with heart defects. Asa, born on the eighth of October 1989 had an emergency surgery for coarctation of the aorta at 10 days of age and another procedure at 13 months. He has since been healthy and is now 28 years of age. Chase Erin was born on the 26th of September 1995, with hypoplastic left heart syndrome. He died on the first of February 2002 at the age of six. The death of Chase devastated his family and Matt separated from his wife two years after losing Chase. Matt would like to share his experience of parenting Asa and Chase, the changes his family has gone through and his journey through grief and what he has learned along the way to help others. Matt, welcome to "Heart to Heart with Michael".

Matthew Creedon: 1:34

Hi, Michael. I'm happy to be here. Thanks for having me.

Michael Liben: 1:38

Tell us about your two sons in the early years.

Matthew Creedon: 1:42

Well, Asa was born, as you said in 1989, with coarctation of the aorta. He, at 10 days of age he went into heart failure and he had to have emergency surgery to correct that. And at 13 months, he has to have a catheterization to reopen the, the aorta, that had started to close up again. Right now he's a 28 year old young man. He's gone to college and got a degree in psychology and a master's in business. He's still trying to figure out his way in life a little bit. And he's been substitute teaching for the last few years in his hometown of Penn Yan, New York. He lives there with his mom right now. He's a great kid, very interested in, still very interested in video games and comics, and all of those, all those things that the one he'll seem to be into these days. He's a great kid. Chase. Chase was born in 1995. And as you as you described, he had hypoplastic left heart syndrome. Before he was born, we knew he was going to have problems and need surgery right after he was born. So he was born in Buffalo and transported directly to, to a hospital in Pittsburgh where a surgeon was waiting for him, a surgeon that specialized in in these kind of problems. He spent his first month and a half of his life in the in the intensive care unit down there and finally got out of the hospital right around Thanksgiving. They they did the first stage of the Norwood procedure, which is three different procedures. Over the next four years, he or the next six years he had four four surgeries total and near Christmas of 2001, after having a pretty good year of being healthy and active, he got sick, like a pneumonia type thing. Then he developed an arrhythmia which turned out to be an atrial fibrillation and then he went into heart failure from there and then died on the first of February. The the doctors in Buffalo where we live, did not pick up on it very well and he ended up going to Hershey for his final treatment.

Michael Liben: 4:17

What are your favorite memories of the two of them together growing up as boys.

Matthew Creedon: 4:21

One of my favorite memories of them is that how much they just loved each other and how they were protective of each other. They used to play video games together and Asa would let Chase win and it was just, it was their thing, their way of bonding. Sometimes all three of us would get together and we'd play play these games together. We spent a lot of time in Ronald McDonald Houses during Chase's life, for better or worse, thank God they were there. But we spent a lot of time there and playing them video games there and playing all the all the games that they had at these places. Those are those are some great memories. And they were always both of them, like I said, very loving, they loved each other. They got along really well. They were always trying to comfort other kids when they were sad. They'd love to laugh and tell jokes. Chase was always, always wanting to tell a joke and always had one ready when he whenever we talked to his grandma and grandpa who lived in Florida.

Michael Liben: 5:31

Did you find that you were overprotective? Or you wouldn't let them do certain things or were they kept away from other friends who might be doing more active things or was that just fine?

Matthew Creedon: 5:42

We let them kind of do what they could do. Asa, Asa had very few limitations. So he could he could do pretty much whatever he wanted after after his after that second procedure. But we were we were definitely protective. Especially of Chase because his problem was so much worse. And yeah, he but but he was a difficult kid to hold down. We always said that it was a great name for him because we were always chasing him around.

Michael Liben: 6:15

It sounds so much like my daughter so much like her. You know, we didn't know what to do. We had never heard of heart disease before. And then suddenly we're in this world of it. And she was our third child and she was keeping up with everybody else. And she was running and active and playing and I my heart was dropping out every time she would like, do anything because I just got so scared.

Matthew Creedon: 6:36

Yes, we worried every time. If there was any kind of impact sports especially we worried because that was that was one of the things that we were warned about.

Michael Liben: 6:44

Yeah, sure. Tell me something special about each one of them something really nice.

Matthew Creedon: 6:53

Asa is, he was the I guess they were two very different, different kids though even though they they got along so well and did have a lot of things in common, very different kids. Asa was the he's the academic. He, you know, by the time he was three or four years old, he knew all the dinosaurs' names. He was he was into science, very much so. When he was that age, I was in grad school, and he used to come to school with me. And he would sit on the floor and play with a lot of the gadgets that were in and pieces and parts electronic parts that were in drawers in the labs that I worked in, and he he'd watched me when I do did my experiments and built my my little experimental setups and that kind of thing. And he'd go down into the, the microscope labs and play with the microscope. So he was he was always very interested in science and kind of kind of really an academic kid and he still is, he's still very, very much into all of that stuff. You can tell you so many facts about but just about anything. Chase was, he was the athlete, that kid could pick up any sport that he saw. All he had to do was see it. And he could do it. Baseball, soccer, whatever, even even, he started to pick up a lacrosse stick. That last that last those last few months that he was here. He could do any he played T- ball that summer that he was five years old or yeah, before he turned just before he turned six. He played he was on a T-ball team. And he could hit the ball. He He loved to be the last batter on the T-ball team. Because the last batter he would he got to hit the ball and just run all the way around the bases. So and that's when everybody that was on the base would just run in and that inning would be over. So he gets, he could do that and it would be like hitting a home run for him. So that's that was his favorite thing. And so even with his, you know, his low, low oxygen levels that he lived with every day, he still liked to run. He didn't care how out of breath he got

Baby Blue Sound Collective Promo: 9:27

Home. Tonight. 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 patients. Many listeners will understand many of the different songs and what they've been inspired by. Our new album will be available on iTunes, Amazon.com, Spotify. I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects. Enjoy the music. Home. Tonight. Forever.

Anna Jaworski: 10:03

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@hearttoheartwithmichael.com. Now, back to our program.

Michael Liben: 10:19

Can you tell us a little bit about the impact of losing chase on your family?

Matthew Creedon: 10:24

In a word, it was devastating. It completely devastated the family. We, even though he knew that Chase was not gonna, he probably wasn't going to live a long life, we certainly didn't expect that to happen when it did. He got he did get sick that that winter and it just developed into this other thing. And ultimately, when we took him to the doctor here in Buffalo, honestly, they didn't do what they were supposed to do. And we ended up we ended up going to Hershey to his original doctor and surgeon down there. And, and by then it was basically too late. He the arrhythmia had been going on for long enough that they was causing other problems. One lung was collapsed, they tried very hard to get that to get the fluid out of there. They ended up putting a pacemaker in down there. They, they did everything they could and, and it was actually after the pacemaker it looked like he was going to be okay. And then all of a sudden, all of a sudden, he just, he just died. And my wife was with him. And my son and I were actually off going to a movie because we thought everything was fine. And you know when you have when you have two children and one is so sick, you gotta it's it's difficult to balance sometimes so because the the one that's not sick, feels left out, he feels neglected. And, and we were at a point where we thought okay now I can spend some time with with Asa he and I we went to went to a store to get it and get Chase a little gift. And then we went to a movie, this just the two of us to get, you know, give him some attention. And that's when that's when Chase died. So I wasn't even at the hospital when he when he died, and my wife was. One of the one of the, the consequences of that as we had very different experiences of his death. She sort of saw it coming, I suppose you could say, in a way more so than I did, because she was with him during the day there and kind of was able to see see what was going on. To me and Asa we left the hospital thinking we'd come back and then we'd actually be going home in a couple of days. That's so for for us it was complete and total total shock. I know, I know she was also shocked too that that this happened. Again, even though he was he was sick we certainly didn't expect expect that to happen.

Michael Liben: 13:18

Sure, you never do, never do.

Matthew Creedon: 13:22

The The other thing that that really that really hit us hard was the fact that his doctor here here in Buffalo just just did not respond the way that he should have. And in fact, we we pursued a malpractice suit against them, because of the laws the wrongful death laws in New York State regarding children, no lawyer would would take it and but although they would admit that yes, there there is a case here, it was not financially worth their while to take it on. So so we we're sort of we were we were crushed in two ways, you know?

Michael Liben: 14:03

Sure, sure. It's devastating.

Matthew Creedon: 14:04

Yeah. So all of that took its toll on on the family. I myself just, I was lost, I was completely lost,

Michael Liben: 14:15

Did you find within the family unit that you could still find a way to support each other?

Matthew Creedon: 14:20

It was very difficult. It was very difficult to do. I know, for me, I had, I had a lot of trouble doing that. Dealing with it was was so painful. And, and then discussing it with the other people with the other family members was also so painful that, that we we all just, I know for me, and I know, I know Asa, we all kind of went into our own little our own little worlds and and I know that that eventually led to the end of the marriage and the family.

Michael Liben: 14:53

Did you find in anyway, did you feel somehow guilty not being there? I mean, you had a moment when you let your guard down and went to the movies with your other son, which is a perfectly normal and natural thing to do. And that's when it happened. Did you feel particularly guilty about that?

Matthew Creedon: 15:09

I did. I did. I felt like I'd let them down. I should have been there.

Michael Liben: 15:16

Because I want to say something right there. You're not alone. There are a lot of people who, at the moment when they let their guard down, that's when these things happen. Our listeners should know this. This is not a moment to beat yourself up. Things happen that are beyond your control. And if you let your guard down for a moment or fewer with somebody in the family doing something for them, that's okay. And a lot of people have to get over that moment. Did you have to work hard there?

Matthew Creedon: 15:44

I felt more guilty for not having done more at the hospital here in Buffalo. I think that we put our faith too much in the doctors that then and did not advocate enough for for Chase. I know, I know, that's how I felt. And and they let us down. And I feel I feel guilty about not not being more, more aggressive with them to get them to do what they should have done. And so that's where my guilt lies primarily.

Michael Liben: 16:21

Well, again, I think, you know, we all think that we haven't done enough. And if we looked at it from an outside perspective, we've probably done more than we think we know. And I think the biggest thing - I remember I used to meet people who were coming into the world of CHD, just their, their children were just being born, the first thing I always say is, don't beat yourself up. And I think that also at the point of death, I think it's very important that you don't beat yourself up but it's, it sounds so simple, but people really want to hurt themselves and you shouldn't because, you know, firtst of all, these are things over which you have no control. And you also don't have the perspective to know that you really have done more than you think you have. And that's what I've seen, not just with myself but with other people as well.

Matthew Creedon: 17:07

I agree. Looking back, I can see that now.

Michael Liben: 17:12

Were there sources outside of the family? Were there friends, maybe wider family members that came to be with you to help you through this?

Matthew Creedon: 17:19

Oh, yeah. Her family lived in the area. They were helpful and supportive. My my extended family lives, mostly out of state and down in Florida, in fact. They did what they could to help us. My dad was around my mom had passed away just six months earlier. So so she wasn't, wasn't there. So honestly, it was all kind of a blur to me.

Michael Liben: 17:46

That's the thing. Yeah. And in that blur, you lose the perspective. You probably were a better fighter than you remember. Okay. People tell me things like, well, you were a great father. I don't remember that. But I must have been, because, you know, we did everything we were told to do. We did everything we knew to do. And things happen, you know, they happen. There's this thing where when your child's in the hospital, you feel like you're doing something if you're actually there. Truth is, there's not a whole lot you aren't doing. You're making yourself feel involved and that's very, very important. I don't I don't belittle that, not at all. But if you're not there and something happens, you didn't make it happen.

Matthew Creedon: 18:25

We also had help from, you know, we were active in the church at the time, in the Catholic Church, and they helped and prayed, it provided a lot of spiritual support to the family and some of our friends did as well. And, you know, brought food and and spent time with us. I myself ended up going into counseling to help me. And it did help I still still do it today because it's it just does it just helps me. I've actually never really dealt with, with the grief the way I should have. And so even you know still today, I'm doing that I'm still working through some of the some of that grief that I'm still hanging on to.

Michael Liben: 19:19

This program 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 resources to the congenital heart defect community to uplift, empower and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at www.hug-podcastnetwork.com. For more information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors, and much much more.

Rejoiner: 19:54

I was five hours old when I had my first surgery. The only advice I can read do someone like those to be there for your family. This is life and you have two choices you either live it or you sit in a corner and cry. I am Anna Jaworski, and the host of "Heart to Heart with Anna". Join us on Tuesdays at noon eastern time on Spreaker or BlogTalk Radio. We'll cover topics of importance for the congenital heart defect community. Remember my friends, you are not alone.

Nancy Jensen: 20:24

I am with Origami Owl Jewelry and we personalize lockets. It has helped me heal so much by having that locket. I've had other friends and customers who have created lockets. They love their lockets and they gift lockets to people who are bereaved or they're celebrating somebody.

Anna Jaworski: 20:44

To get your own Origami Owl locket contact Nancy Jensen on Facebook or her website Nancydancyme.origamiowl.com. You are listening to heart to"Heart with Michael". If you have a question or comment that you would like addressed on our program, please send an email to Michael Liben at Michael@HearttoHeartwithMichael.com. Now, back to "Heart to Heart with Michael".

Michael Liben: 21:11

Before the break, you were telling me that your mother died six months almost to the day before Chase died. I want you to tell me a bit about how you think the two are related. And then I want you to tell me about the day that he died and how that all sort of came together.

Matthew Creedon: 21:29

Yeah, my mom died of ovarian cancer very, very quickly, in the summer before Chase died. So when Chase became sick and he died, there was some comfort in knowing that that she was there, waiting for him. And something very profound happened. At least I saw it even that day, I realized I realized that the day that Chase died was very cold and rainy, and just a miserable, miserable winter day in Pennsylvania, in Hershey, Pennsylvania. And when my son and I were gone to we had gone to the movies, we were going to stop at the store. When my son and I were coming out of the store, it was it was sunny and warm and it was it was a completely different day. And that happened to be right about the time when Chase died. And, and ever since then I, I knew, I knew in my heart that that was that was when God reached down and and and rescued him. He was in terrible pain. He was suffering so badly. I prayed for, for God to take his pain away. And I prayed as hard as I could for that. And, and he did. He came down and I feel like he just reached down and saved him. Unortunately, that meant taking him from us. But I knew at that at that time he was okay. Even though it was it was still extremely difficult to accept, and and I knew also knew that my mom was there with him. His grandma was up there and waiting for him.

Michael Liben: 23:19

Had they seen a lot of each other when when they were both alive.

Matthew Creedon: 23:22

They did actually they, they helped us. My mom and dad helped us move from Florida to New York, they came up to visit, we definitely went to visit them most often. And we talked on the phone quite often. So he he definitely knew his grandma. And they had a good relationship.

Michael Liben: 23:42

So what can you share with the rest of us from this experience? What can you tell us that's helpful to people who are maybe looking down the barrel of that same gun right now?

Matthew Creedon: 23:53

One of the one of the greatest lessons that that all of this that we that we, his mother and I especially got out of this, all these experiences of being in hospitals, dealing with doctors, dealing with nurses, dealing with all of the, all of that stuff that you that you have to deal with in the hospital is, you have to be an advocate for your child. No one, no one is going to take better care of your child than you. And you have to if your gut tells you something, that something's wrong, you need to you need to tell somebody you need to tell the doctor. My wife, I know, she saved Asa's life by because her instincts told us told her something's not right here with this infant, even though it was her first child. She knew something wasn't right. The doctors were telling her no, no, you're just being over overdramatic, you're you're worrying too much about you know, this is your first child. But she was right. There was something very wrong and and we we followed it, she followed it. She contacted another doctor, a heart doctor. And sure enough, there was a problem. So, and with Chase, it was the same way. She knew. She knew when things were going wrong, much more so than I did. Like, she just she just had those motherly instincts that told her that something's not right here and I got to pursue it. And, and, and she, she really was a huge advocate for him. You know, I had to do I had to work a part of the time that these kids were in hospital. So she's there with them all the time. She was her advocate, she fought for them, and and made sure they got the care they needed. And I think that's critically important for anybody that's going through this.

Michael Liben: 25:48

I agree. I think that that's the most important thing you can do. And it's amazing to me, that CHD of any any variety from the most innocuous to the most serious represents at least maybe more than 1% of all births. That means that if something's wrong, doctors really have to sit up and pay attention. And yet very often, they'll tell you well, you're a first time parent and relax and everything's fine. Because as far as they're concerned, from what they can see and from their regular experience, everything is alright. But when it's not all right, they have to take that into account. And I think they need to trust the parents more. Parents are four more eyes on that child. And you just got to keep them open and keep 'em working. You're right.

Matthew Creedon: 26:29

If I could add one more thing, is that after it was all all said and done, and since and since Chase's death, you know, I've learned a lot about how my son Asa felt as he went through this as a brother as and as the child that wasn't sick. And I think that I know I could have done a better job of making sure that Asa was you know, was not put second so many times. And but it's it's very, it's a very difficult balance to keep. But I think that's something that parents needed to pay attention to, as you're going through it as well, because because that the other child can feel very left out, and it can have a very long term impact.

Michael Liben: 27:20

You know, years later, my older daughter told me exactly that. She said she always felt second to Liel. But you know what, kids are really resilient, and they really understand what's going on. And they know that if you're running off to a hospital, they have room for that. That's been my experience, and they grow up as better adults. Having been there they grow up as better adults, having seen what it's like to care for somebody. I'd like to go out with something a little more positive. So tell me what your family does, individually or together to celebrate Chase's life today.

Matthew Creedon: 27:49

I would say for all of us, one of the things that we do to celebrate his life is to try to keep his life fresh in our minds and keep his attitude towards life fresh in our, in our memory. He was a light, he was such a light. And he had an impact on everybody that met him. And he lived life. He did not, he didn't worry about how much pain he was in. He didn't worry about the fact that he was at 75% oxygen saturation. He just he just lived and so that's so just by doing that, I think we're celebrating him. The other thing we did at his at the school he was going to he was in kindergarten at the time. We had a little award that was in his name where we gave their kindergarten kids a little monetary award went towards the tuition of the school. So that was another way. And his mom takes extremely good care of his grave and changes the flowers and celebrates his birthday and all that. I don't live I live two hours away so it's it's not so easy for me but she's she's been absolutely amazing when it comes to to that, and celebrating him there. And so and there's a lot of other kids that still remember him that live there.

Michael Liben: 29:07

Sure, sure. I think both of you are amazing parents, I think his mother for what she does and how she was with him, and I think you too, for being able to tell the story. And that concludes this episode of "Heart to Heart with Michael". I want to thank Matt Creedon for sharing his sons' Asa and Chase's journeys with us. And I hope his remembrance of Chase has inspired those of you who are listening. Thanks, Matt, for so much for being with us.

Matthew Creedon: 29:31

You're very welcome. And thank you for letting me share my story.

Michael Liben: 29:35

I'll talk to you soon, but until then, please remember, our loved ones are still with us as long as we keep their memories alive.

Heart To Heart with Michael Promo: 29:43

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.