Bereaved But Still Me

Remembering Chase

September 05, 2018 Matt Creedon Season 2 Episode 9
Bereaved But Still Me
Remembering Chase
Show Notes Transcript
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.Support the show

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spk_2:   0:13
Welcome to the night episode of the second Season of Heart to Heart with Michael program from the bereaved community. Our purpose is to empower community with resource is support and advocacy information. This season's theme is a celebration of life, and we feel fortunate they have met Creadon 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. 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. Ah, program. Today, remembering Chase takes a look at one father who lost a son to CHD and how it affected his family. Mad Cretan has two sons who were born with heart defects. Ace of Born on the eighth of October 1989 had an emergency surgery for co optation of the aorta at 10 days of age and another procedure of 13 months. He has since been healthy and is now 28 years of age. Chase Aaron was born on the 26th of September 1995 with hyper plastic 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. That would like to share his experience of parenting a PSA 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.

spk_0:   1:34
I'm Michel. I'm happy to be here. Thanks for having me tell

spk_2:   1:38
us about your two sons in their leaders.

spk_0:   1:42
Well, a so was born has you said in 1989 with, um, cohabitation the aorta. He 10 days of age. He went into heart failure, and he had to have emergency surgery to correct that. Um, and at 13 months, he had to, um, have a catheterization to reopen the the aorta that had started to close up again. Right now, he's, ah, 28 year old young man. He's gone to college and got a degree in psychology and a master's in business. Uh, 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. Um, in his hometown opinion. New York. Ah, he lives there with his mom right now. Ah, he's ah, great kid. Very interested in still very interested in the video games and comics and and all of those all those things that the millennials seem to be into these days. It's a great kid. Chase Chase was born in 1995. Um, 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 needs surgery right after he was born. So he was born in Buffalo and transported directly to the hospital in Pittsburgh where, or a surgeon was waiting for him, a surgeon that specialized in and these kind of problems. He spent his first month and 1/2 of his life in the in the intensive care unit down there and finally got out of the hospital right around Thanksgiving. They did the first stage of the Norwood procedure, which is three different procedures over the next four years. He for the next six years, he had for four surgeries total and near Christmas of 2001 after having a pretty good year of of being healthy and active. Ah, he got sick like a pneumonia type thing. Then he developed an arrhythmia, which turned out to be a tree on atrial fib. Relation. Uh, And then he went, um, into heart failure from there and then died on the first of February. The you know, the doctors in in Buffalo where we live did not pick up on it very well. And he ended up going to Hershey for his final final treatment.

spk_2:   4:17
Well, what do you favorite memories of the two of them together growing up his boys.

spk_0:   4:21
One of my favorite memories of them is that is how much they just loved each other and how they were protective of each other. They used to play play video games together, and so would would late let chase when, and it was just Ah, 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 is in Ronald McDonald houses during chases, life, for better or worse. Thank God they were there. But we spent a lot of time there and playing video games there and playing all the games that they had at these places, those air. There's some great memories and they were always both of, 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 wanted to tell a joke, and I always had one ready when he whenever we talked to his grandma and grandpa, who lived in Florida,

spk_2:   5:31
did you find that you were overprotective or you wouldn't let them do certain things are with a kept away from other friends who might be doing more active things? Or was that just fine?

spk_0:   5:42
We let them kind of do what they could do. A PSA, a PSA was had very few limitations, so he could. He could do pretty much whatever he wanted after after his, uh, 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 it. But he was a difficult kid toe hold down. We always said that it was a great name for him because we were always chasing him and

spk_2:   6:15
sense so much like my daughter so much, 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 actively, and I my heart was dropping out every time. She would, like, do anything, cause I just got so scared.

spk_0:   6:34
Yeah. Yes, we worried every time if there was any kind of impact sports especially worried, because that was That was one of the things that we were warned about.

spk_2:   6:44
Yeah, sure. Tell me something special about each one of them. Something really nice.

spk_0:   6:51
Uh, esa is, um he was the guest. There were two very different different kids, though, even though they got along so well whenever and did have a lot of things in common. Very different kids s a was the UC academic. He you know, by the time he was three or four years old, he knew all the dinosaurs names. Ah, he was He was in the 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 Elektronik parts that were in drawers in the labs that I worked in. And he would watch me when I do. Did my experiments and built my my little, um, experimental set ups and that kind of thing. And, ah, he go down into the microscope labs and play with the microscope. So he was He was always very interested in science and kind of kind of Ah, really an academic kid. And he still is still very, very much into, um, all of that stuff where you can tell you so many facts about but just about anything. Um, the chase was he was the athlete, uh, that 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 on that last that last those last few months that he was here. He could do any played t ball that summer that he was five years older. Yeah, before he turned just 40 Turn six. He played. It was on a T ball team and, ah, he could hit the ball. 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 basis. So on day, that's when everybody that was on the base would just run in and that ending 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

spk_2:   9:05
was a

spk_0:   9:05
favorite thing. And so, even with his, you know his low, uh, low oxygen levels that he lived with every day Hey, still like to run? He didn't care how out

spk_4:   9:18
of breath he got 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. Our new album will be available on iTunes amazon dot com. Spotify. I love the fact that the proceeds find this CD are actually going to help those with congenital heart defects. Join music home tonight forever. 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.

spk_2:   10:19
Can you tell us a little about the impact of losing chase on your family?

spk_0:   10:24
Um, in a word, was devastating it Ah, 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,

spk_2:   10:45
you know,

spk_0:   10:46
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 and buffalo, honestly, they didn't do what they were supposed to dio and we ended up We ended up going to Hershey to his religion original doctor and surgeon down there. And, um and by then it was basically too late. He the arrhythmia had been going on for long enough that it was causing other problems. One lung was collapsed. They tried very hard to get that. Get the fluid out of there. They ended up putting a pacemaker in down there. They they did everything they could. And, um and it was actually after the pacemaker. It looked like he was gonna be okay on. And then all of a sudden, all of a sudden, he just, uh he just died. And, um, my wife was with him and my son and I were actually going to a movie because we thought everything was fine. And you know, when you have when you have two Children and one, this 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 we were at a point where we thought, OK, now I can spend some time with with a psa. Ah, he and I, we went toe, went to a store to get it get chase a little gift, and then we went to a movie That's just the two of us to get. Give him some attention and and that's when that's when Chase died. So I wasn't even at the hospital at when he when he died. Um, and my wife waas one of the one of the consequences of that as well. We had very different experiences of his death. She saw she saw 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 to me and a So we left the hospital thinking we come back and and we'd actually be going home in a couple of days. Nets. So, for for us it was complete and total total shock. I know, I know. She was also shocked to that that this happened, um, again, he even though he was, he was sick. We certainly didn't expect Expect that to happen.

spk_2:   13:18
Sure you never do. You never do.

spk_0:   13:22
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, in fact, way pursued a malpractice suit against them because of laws, the wrongful death laws in New York state regarding Children. No lawyer would I would take it. And But although they would admit that, yes, there there is a case here was not financially worth their while to take it on. So So we were sort of were crushed in two ways, you know?

spk_2:   14:03
Sure, sure. It's good. Yeah.

spk_0:   14:06
So all of that took its toll on the family. I myself just Ah, I was lost. I was completely lost.

spk_2:   14:15
Did you find within the family unit that you could still find a way to support each other?

spk_0:   14:20
It was very difficult. It was very difficult to do. I I know for me, I had I had a lot of trouble doing that, uh, dealing with it 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 a PSA. We all kind of, um, went into our own little our own little worlds, and, uh, and I know that that eventually lead to the end of the marriage and family.

spk_2:   14:53
Did you find it anyway? Did you feel somehow guilty not being there? I mean, you at 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?

spk_0:   15:09
I did. I did. I I felt like I had let him down that I should have been there

spk_2:   15:16
because I want to say something right there. Um, you're not alone there. 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 if you're with somebody in the family doing something for them, that's OK, and a lot of people have to get over that moment. Did you have to work hard there?

spk_0:   15:44
I have felt more guilty for not having Dunmore at the hospital here in Buffalo. I think that we put our faith too much in the doctors it and did not, um, advocate enough for for Chase. I know, I know, that's how I felt 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,

spk_2:   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 nice to meet people who we're coming into the world of CHD just 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 out, but it's sand sounds so simple, But people really want to hurt themselves, and you shouldn't because you know prison of these things of which you have no control, and you also don't have this perspective to know that you really have done more than you think you have. And that's what I have seen. Not just with myself, but with other people as well.

spk_0:   17:07
I agree. From the looking back, I can see that now.

spk_2:   17:12
Where? Their sources outside of the family. With friends, maybe white or family members who came to be with you to help you through this.

spk_0:   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 toe help us. My dad was around. My mom had passed away just six months earlier. Eso so she wasn't, wasn't there? Honestly, it was all kind of a blur to me. That's the space much. And

spk_2:   17:48
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 dio and things happened. You know, they happened. There's this thing where when your child's in the hospital, you feel like you're doing something If you were actually there. Truth is, this not a whole lot you are doing. You make yourself feel involved in. That's very, very important. I don't belittle that. Not at all. But if you're not there and something happens, you didn't make it happen.

spk_0:   18:25
We also had help from, you know, we were. We were backed up in the church at the time and the Catholic Church and, um they helped and he prided, provided a lot of spirituals support, um, to the family. And so and our friends did as well. And, uh, you know, brought food and spent time with us. I myself ended up going into, um, counseling. Help me on. And it did help. I still still do it today because it's it's just good. It just helps me good. I've actually never really dealt with with the grief the way I should have. And so even still, today I'm doing that. I'm

spk_4:   19:10
still working through some of the some of that grief that that I'm still hanging onto.

spk_5:   19:19
This program is a presentation of hearts, unite the globe and is part of the Hug Podcast network are tonight. The globe is a non profit organization devoted to providing resource is to the congenital heart defect community to uplift on power and enrich the lives of our community members. If you would like access to free resource is pertaining to the CHT community, please visit our website at www dot hugged dash podcast network dot com for information about CHD, the hospitals that treat Children with CHD summer camps for CHD survivors and much, much more.

spk_4:   19:54
I was five hours old when I had my first surgery. The only advice I could really give someone like that is to be there for your family. This is life and you have to live it or you sit in a corner and cry. I am in a Gorski and the host of heart to Heart with Anna. Join us on Tuesdays at noon Eastern time On speaker are blocked Talk radio. We'll cover topics of importance for the congenital heart defect community. Remember, my friends, you are not alone. I am with origami l jewelry and we personalized lockets. It has helped me heal so much by having that locket. I've had other friends and customers who have created lockets. They'd love their lockets, and they gift lockets to people who are bereaved or they're celebrating somebody to get your own origami. Our luck it contact Nifc Jensen on Facebook for her website. Dancey dancey me dot origami owl dot 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 even at Michael at heart to heart with michael dot com Now back toe heart to heart with Michael Before

spk_2:   21:11
the break, you were telling me that your mother died six months almost to the day before chase died. I want to tell me a bit about how you think the two are related. And then I want you to tell me about that the day that he died and how that all sort of came together.

spk_0:   21:28
Um, yeah, My mom died of ovarian cancer very great quickly in the summer before Chase died. So when chase became sick and he died, there was some comfort in knowing that she was there waiting for him waiting for him, and something very profound happened a to least I saw it that even that day I realized I realized that the day the 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. 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 ever since then I I knew I knew in my heart that that was that was when God reached down and and rescued him. No, he was in terrible pain. He was suffering so badly. Um, I prayed for for God to take his pain away. On that 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. Unfortunately, that meant taking them 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 I knew also knew that my mom was there with him. His grandma was up there and waiting for him.

spk_2:   23:19
Had they seen a lot of each other when when they were both along,

spk_0:   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 definitely knew his grandma and they had a good relationship.

spk_2:   23:42
So what can you share with the rest of us from this experience? But can you tell us that's helpful to people who are maybe looking down the barrel of that same gun right now?

spk_0:   23:53
One of the one of the greatest lessons 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 on advocate for your child. No one. No one is gonna take better care of your child than you. And, um, you have to. If your gut tells you something that something's wrong, you need You need to tell somebody you need to tell the doctor. Um, my wife I know she saved aces 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 worrying too much about, you know, this is your first child, but she was right. There was something very wrong, and we we followed it. She followed it. She contacted another doctor, a heart doctor. And sure enough, there was a problem. So Ah, And with Chase, it was the same way she knew she knew when things were going wrong, much more so than I. I did, uh, she just she just had those motherly instincts. I told her that something's not right here, and I got a pursuit to it. And and she she really ah was a huge advocate for him, You know, I had to do I had to work a part of the time that thes kids were in hospitals. So she's there with him all the time. She was there, advocate. She fought for them and made sure they got the care they needed. And I think that's critically important for anybody that's going through this.

spk_2:   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 a to 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 all right. 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 or four more eyes on that child. You just got to keep them open and keep working right.

spk_0:   26:29
If I could add one more thing is shut after it was also all said and done. And since and since Chase's death. You know, I've learned a lot about how my son, a PSA, felt as he went through this has as a brother has in as a child, that wasn't sick. And I think that, uh, I know I could have done a better job of making sure that a PSA was, um, you know, was not put second so many times. And but it's it's very, very difficult balance to keep. But I think that is 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, ah, very long term impact.

spk_2:   27:20
You know, years later, my older daughter told me exactly that. She said she always felt second to Leo, But you know what? Kids? A really resilient, and they really understand what's going on, and they know that if you're running off to the hospital, they have room for that. That's been my experience, and they grow up. Is better adults having been there? They grew up his better adults. Having seen what it's like to care for somebody, I'd like to go out with something of a more positive. So tell me what your family does individually or together to celebrate just his life. Today,

spk_0:   27:49
I would say for 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 memory. He was a light. He was such a light. Uh, that 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. They 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 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. Ah, little, um, monetary award. It went towards the tuition of the school, so that was another way. And his mom takes extremely good care of his grave on 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 toe to that and celebrating him there. And so and there's a lot of other kids that still remember him that lived there.

spk_2:   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 two for being able to tell the story. And that concludes this episode of heart to heart with Michael. I want to thank Matt Cretin for sharing his son's a set and chases journeys with us. And I hope his remembrance of Chase's inspired those of you. Listen, thanks, Matt, from so much for being with us.

spk_0:   29:31
You're very welcome. And thank you for letting me share my story.

spk_2:   29:35
I'll talk to you soon, but until then, please remember, our loved ones were still with us as long as we keep their memories alive.

spk_4:   29:43
Thank you again for joining us. We hope you have gained strength from listening to our program heart to heart. with Michael could be heard every Thursday at noon Eastern time. We'll talk again next time when we'll share four stories.