Heart to Heart with Anna

Heart Mom to a Son with VACTERL Association

January 08, 2019 Aubrey Byrnes Season 3 Episode 2
Heart to Heart with Anna
Heart Mom to a Son with VACTERL Association
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Show Notes Transcript

Aubrey Byrnes is a rare mom - she's the mother of Wyatt Nathan Arthur Byrnes, aged 5, and Colton Paul Byrnes, aged 4. Wyatt was born 13 weeks premature and had a rough medical journey. 

Colton, AKA Superman without a Cape, was born with VACTERL Association, a disorder that affects many body systems. VACTERL stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities. 

As part of his condition, Colton has multiple CHDs including truncus arteriosus, ventricular septal defect, atrial septal defect, pulmonary stenosis, and right aortic arch. During his short life Colton has had 52 procedures, including 6 heart catheterizations and 4 open-heart surgeries. 

Aubrey is married to Rick and together they have a unique, rare outlook on life which has helped them stay together. Aubrey studied American Sign Language Interpreting at Augustana University and works as a freelance interpreter/translator.

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Intro:

Let your kids show you what they can do. Don't listen to everything they can't do.

Anna Jaworski:

Welcome to Heart to Heart with Anna. I am Anna Jaworski and the host of your program. This is the second episode of Season 13. I'm very excited for today's show to feature a very special mother. Today's show is entitled Heart Mom to a Son with VACTERL Association. Aubrey Byrnes is a rare mom. She's a mother of Wyatt Nathan Arthur Byrnes aged five and Colton Paul Byrnes aged four. Wyatt was born 13 weeks premature and had a rough medical journey. Colton, also known as Superman without a cape was born with VACTERL Association, a disorder that affects many body systems. VACTERL stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities, as part of his condition. Colton has multiple congenital heart defects including truncus arteriosis, ventricular septal defect, atrial septal defect, pulmonary stenosis, and right aortic arch. During his short life, Colton has had 52 procedures including six heart catheterizations and four open heart surgeries. Aubrey is married to Rick and together they have a unique rare outlook on life, which has helped them to stay together. Aubrey studied American sign language interpreting at Augustana University and works as a freelance interpreter/translator. Welcome to Heart to Heart with Anna, Aubrey.

Aubrey Byrnes:

I'm happy to be here.

Anna Jaworski:

Well, I'm excited to talk to you. You are the first person to come on Heart to Heart with Anna to talk about VACTERL Association, so let's get right into it. This condition is so rare that I'm sure a lot of people would like to know if you have a genetic history of this problem or if you know what caused this condition in Colton.

Aubrey Byrnes:

To our knowledge, it's not a genetic disorder. There's nothing that really links to how somebody gets VACTERL Association. It's a mix of conditions that happen that just all together become VACTERL Association. Both Rick and myself have been tested genetically. Nothing came about from either one of those. Colton has been tested at two different hospitals for genetics from Sanford Hospital in Sioux Falls, South Dakota, and then also at C.S. Mott Children's in Ann Arbor, Michigan testing genetics and nothing has stemmed from either of those. We do know that many children who are born with truncus arteriosus also have 22Q11.2 Deletion, which is DiGeorge Syndrome and Colton does not have that. But many children who do have that DiGeorge Syndrome also have VACTERL. So we don't know if maybe there's a link in there somewhere, funny story is that when Rick and I met with the geneticist, the first thing they asked if maybe we were related because that is a tendency of how people get VACTERL Association and we are not related. We are married outside of blood lines. So..

Anna Jaworski:

Well no, that's an important thing to know. And there are a lot of people in other countries where it's not uncommon to marry first cousins or close family members and so that's definitely something to be aware of. Okay, I'm glad that you let me know that cause I didn't know that that was a potential situation. Wow. Okay, so it's not because you're closely related because you're not, we don't really know what causes it then. Is that the way it is?

Aubrey Byrnes:

Right.

:

Okay. Well, what does having a child with VACTERL Association mean to your family?

Aubrey Byrnes:

From day one, when we found out that Colton wasn't going to be born a normal quote unquote child, we decided that we weren't gonna treat him any differently. And so from a day to day perspective, we try to treat him just as we treat our other child and keep it as real for him as possible. However, we do understand that everything in our life revolves around Colton and revolves around his needs. So not only are all of our family trips oriented around an appointment or a surgery, but our day to day life is also oriented around him. So whether it's taking him to therapy three to five times a week, thinking about the fact that he's not growing, he's not eating, he's not sleeping. What does that mean or what does that causing, you know, if he takes a weird breath is that because his ribs are malformed, or is that because he has a heart problem every time he does something that maybe a normal child would also do? It's taking that extra thought of what is that, why is he doing that? What does that from, um.

Anna Jaworski:

It's alot of analysis.

:

Absolutely. And it affects Wyatt as well. Um, our older son, we were supposed to stay in the hospital, you know, 7 to 10 days for our first surgery a nd ended up saying 10 weeks, which causes a lot of separation anxiety and fear of where are mom and dad, fear of what's happening to my brother. And knowing that every time we're going to do something, whether or not it's g o to school for the first day, whether it's playing baseball, it has to make sure that Colton can attend that same function that we're gonna go to. And so everything in our lives revolves around Colton and his needs.

Anna Jaworski:

And yet you said that Wyatt was born prematurely and that he's had a rough medical history too. Are you having to deal with multiple problems with him as well?

Aubrey Byrnes:

The long lasting effects of Wyatt's conditions are more asthma related, breathing related, allergies, those types of things. So he can do the more day to day fun things that maybe quilting won't be able to, but we do still have eye issues and breathing issues that we deal with, with Wyatt being born so early.

Anna Jaworski:

Wow. So you really have a full plate, don't you.

Aubrey Byrnes:

*laughs* Yes. Yes. Every single day.

Anna Jaworski:

Oh my goodness. Well, on your Facebook page you refer to Colton as superman without a cape, which I don't know if you guys have seen the Incredibles, but Edna would say no capes, so that's good that he's super rare without, a cape. Tell me what you meant by that title for him.

Aubrey Byrnes:

When we found out about Colton, it started from the beginning of where he was going to be born at 20 weeks and be stillborn, and he would have to be a fighter from that day, to finding out his heart defect, to finding out his genetic disorders. He's been a superhero in training from day one, and he's had to fight every single day of his life. But without truly knowing him, you may not actually see that he's a superhero. He doesn't have external features that would make you think he's a superhero. There's something wrong with him. And so that's really where the title came from.

Anna Jaworski:

I love it. Well, tell me a little bit about Colton's personality.

Aubrey Byrnes:

He is the most stubborn and fearless little boy you would ever meet in your life. He's the kid who will walk in a pool and jump headfirst in and not even question it. He's the kid who is on the counter and getting a snack in the afternoon by himself. He does everything in his own time and his own way and he has been like that since day one.

Anna Jaworski:

Wow. How is he as far as being a little brother to Wyatt? Does he copy everything his brother does?

Aubrey Byrnes:

He absolutely idolizes his brother. If Wyatt is playing with cars, he has to have cars. If he's playing with Spiderman, he has to play with Spiderman. Everything that Wyatt does, likes, lives for, Colton has to be right there. And whenever Coltons going in for a surgery or a poke or prod or anything like that, the first person he asks for is his brother to be there holding his hand, telling him it's going to be okay. So they have a bond that is like no other.

Anna Jaworski:

I think that is so special. I have two sons as well and it was exactly the same way with my two boys. And for a little while Alex was really afraid of needles. You know, our kids get poked a lot more than the average child and it's no fun. And a lot of us don't like needles anyway. But Joey came to the rescue because for a little while we were afraid maybe Alex had some kind of blood disorder and so we were having to go in every single week to get pokes. And so we went in for the third week in a row and Alex really did not want to get poked again. And so Joey went over and took his brother's hand and said, it's going to be okay. He said, if you don't like it when they poke you, he said, just look at me and say your dogs name, which was domino. Well, by the time we left that hospital, everybody in the whole hospital knew the word domino cause it was shouted at the top of his lungs, but I thought how smart is that and John was about, I'm going to say Joe was six or seven years old when he said that he just took control of the situation and was there and it was brother to brother. It was like the rest of us didn't even exist.

Aubrey Byrnes:

Yup, Yup. Absolutely. That's exactly how it is with Wyatt.

Anna Jaworski:

I just love that. That's an awesome story.

H2HwMichael:

"Texas Heart Institute were offering us a mechanical heart and he said,"No, Dad, I've had enough. Give it to someone who's worthy."""My father promised me a golden dress to twirl in. He held my hand and asked me where I wanted to go.""Whatever strife or conflict that we experienced in our long career together was always healed by humor." Heart to Heart with Michael... please join us every Thursday at noon Eastern as we talk with people from around the world who have experienced those most difficult moments.

Rejoiner:

You are listening to Heart to Heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna@HearttoHeartwithAnna.com. That's Anna@HearttoHeartwithAnna.com. Now back to Heart to Heart with Anna.

Anna Jaworski:

Aubrey, before the break you were telling us about this rare disease called VACTERL Association. How common is it?

Aubrey Byrnes:

We were told that VACTERL occurs and one in about 40,000 newborns, so for us it isn't common at all. We have never met a family in person. We've never met a family locally who also has VACTERL some of Colton's conditions that placed him in that VACTERL Association family such as camptodactyly, which is where his middle finger doesn't straighten, is so rare that our local medical team has never seen it. They have to call outside hospitals to figure out the care that he needs. What kind of surgeries we can do. He's had three surgeries on it thinking it was trigger finger. Finally figuring out that's not fixing it. Let's look at what's going on with it. And then camptodactyly also typically appears on the fifth digit, which would be your p inky finger and Colton's i s i n his middle finger. So to add to the rarity of that just explains even more about how rare Colton's conditions are.

Anna Jaworski:

Well, what is the prognosis? There are so many different conditions. When I was looking at VACTERL Association, they said that even though it stood for all those different items that I listed earlier at the beginning of the show, that you had to have a certain combination, a certain number of them. So not everybody has all of those different conditions.

Aubrey Byrnes:

Right. And Colton only has V, C, T, and L, so he has four of the seven. So his prognosis is good because our medical team identified those issues and made game plans of how to combat those, each issue individually and as a whole, how they would impact his life from a VACTERL Association standpoint. His prognosis is good.

Anna Jaworski:

Okay. So I met a dad on the Internet, Golly, I want to say 20 years ago, whose son had at that time they were calling it Bartter syndrome. And I think VACTERL Association has kind of been a progression from that original Bartters and his son had the anal problem, at the beginning, anal atresia. So his very first surgery had to be for that. Even though we had a heart condition too. That's not what they were most concerned about. What was Colton's first surgery?

Aubrey Byrnes:

Colton's first surgery was to repair the truncus arteriosus because he only had one artery coming from his heart. He didn't have blood flow going through, and being reoxygenated. However, from there we then did an x ray of every single bone in his body to determine VACTERL. So he didn't necessarily have a surgery right away, but it was right on the radar at three days old to have an x-ray of every single bone in his body to determine if there was any abnormalities with the bones, if there was any other further conditions that they could see, things of that nature. And then genetic testing was done day four.

Anna Jaworski:

Wow. That's a lot to deal with. Yeah. I mean, especially already having had one child who was premature and had conditions, I'm sure you were hoping that this pregnancy was going to be different than that. Did you have any idea before Colton was born that he would have any of these conditions?

Aubrey Byrnes:

So we knew that Colton had a heart condition at our 20 week appointment. However, we had no idea about any of the other issues. He was born with an extra toe while I was pregnant. I kept saying my ribs hurt, my ribs hurt. And they were like, oh, it's pregnancy. That's pregnancy. Your ribs are supposed to hurt. That's how it's supposed to be. And we later found out that his extra toe was actually sticking into my rib. Wow. We, I guess knew in Utero, but never actually knew what the reason was. But we didn't find out. We didn't get an actual diagnosis of VACTERL until Colton was about six weeks old.

Anna Jaworski:

Oh Wow. So even though they did all the x-rays at three days of age and then they did the genetic testing at four days of age, they weren't able to come back and give you all of that information for weeks?

Aubrey Byrnes:

Right. The reason that we did the bone x rays and the genetic testing was because so many babies who are born with truncus tend to have DiGeorge syndrome and so they were trying to figure out if we had DiGeorge syndrome or if Colton had DiGeorge syndrome. That was the initial reason for all of the testing. Then they started putting together that he had an extra toe he had this middle finger that didn't straighten out, he had heart issues, he has a horrible scoliosis, and he has butterfly vertebrae and vertebrae that are missing and he has malformed ribs and so all of those things started adding up and that's kind of what led them to think maybe it's more of a VACTERL and not a DiGeorge syndrome.

Anna Jaworski:

All right. Okay. What's Butterfly Vertebrae? I've never heard of that before.

Aubrey Byrnes:

Typically your vertebrae are like a square or more like a rectangle and then they have a padding between each one of those rectangles and Colton, however, has two squares that don't meet in the middle, so, but it looks like butterfly wings.

Anna Jaworski:

Wow. Okay. That sounds dangerous.

Aubrey Byrnes:

Yes. Like if you looked at an x ray of his back, it looks like big rock chunks is really what it looks like when it should look like this nice rounded out square pads, square pad as what a normal back would look like. His kind of looked like somebody took some rocks from the lake and then just put them in his back and there's all these different formations of where his vertebrae sits or where they turn or curve because of his scoliosis and he also had a tethered spinal cord because of all those things. Now it's just something we watch until he gets older and we can see how they're going to align themselves out. That was part of the reasoning of why we did the bone x-ray to see what that looks like.

Anna Jaworski:

Wow. When Alex was having his third open heart surgery. He was in a children's hospital and there was a young man, I want to say he was in high school, so I think it was 14 or 15 who was born without all his ribs and he was having titanium ribs put in, but this was not something that was quick or easy to do. I can't even remember how many surgeries he said he had had up until that point because he had some other issues as well. Is this something where Colton is going to require additional surgeries to put ribs in place?

Aubrey Byrnes:

At this point we're hoping, no, he does have a missing rib and he has two ribs that look like Y shapes on the end, so instead of wrapping around your body, his kind of make a Y and then stop until we can see how he grows and how the scoliosis is going to play out. I mean whether or not they would want to do a rod or a brace of some kind to fix or stop the scoliosis. They're not really focused on the ribs, but it is something that has been discussed that maybe we need to look at a way to embrace those ribs so that they hold him in and hold all the parts in the right spot like they're supposed to.

Anna Jaworski:

Right. I mean your rib cage protects your internal organs. So it's really kind of an important feature in your skeletal makeup.

Aubrey Byrnes:

Absolutely. And we have an amazing medical team who works with us. I think we see them every three to six months depending who it is that takes x-rays, does MRIs, looks to see how things are changing, how things are growing. And they're also very involved on the research side of what is the next technological advancement that could benefit Colton and where are we at in the process. But they also don't want to start at the age of four when he hasn't really began to start growing yet and start making changes or alterations when maybe his body would do it on his own in the next 8 to 10 years.

Anna Jaworski:

Wow. That's amazing.

Home2night4ever:

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.

Speaker 5:

Anna Jaworski has written several books to empower the congenital heart defect or CHD community. These books can be found at amazon.com or at her website, www.babyheartspress.com her best seller is"The Heart of a Mother", an anthology of stories written by women for women in the CHD community Anna's 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 babyheartspress.com to find out more.

Anna Jaworski:

Aubrey, before the break you were telling us about some of the conditions associated with VACTERL Association and some of the treatments that would come into play for the conditions that were with the VACTERL Association. What advice do you have for a couple of who's just now discovering their baby will be born with a series of defects?

Aubrey Byrnes:

The first thing I would say is be open minded. Do your research. Take what the doctors say with a grain of salt because we were told that Colton would never walk, he'll never talk, he'll never eat, he'll never function outside of a Rehab facility. And Colton is now home. He's four years old. He goes to preschool, he eats every single meal. He's no longer on a g tube. He plays baseball, he goes to swimming lessons. I mean he has defeated every odd that they gave us. So be open minded, ask questions, research and use websites that are familiar. So use the mail, the NIH, use some of those websites that are bound for this type of condition. And the last piece of advice would be use Facebook. I know that it sounds cliche, but I found so many amazing groups who have rapport with some doctors who can tell you"this is the question to ask" or"this is what you should be looking for" or"this is what to do". Some of my best friends are people I've never met, but they know exactly what I'm going through, which is something my friends that are local here with me could never offer me. Right. My friends are here and they support me. My family is here, but they don't have a VACTERL kid. They don't have a kid with a heart condition. Use the resources that you have and just be open minded. Let your kids show you what they can do. Don't listen to everything they can't do.

Anna Jaworski:

Oh, I love that. Focusing on what they can do and they will surprise you. See, you and I are both so lucky because we had Wyatt and Joey who are probably the best therapists that Colton and Alex could ever have. Right?

Aubrey Byrnes:

Absolutely. The minute that Wyatt was out walking on the curb, then Colton's walking on the curb and that's physical therapy right there at its best, and I didn't have to tell them what to do or anything. My husband always tells me,"push him, you'd push Wyatt, push Colton, give him a challenge, make him show you that he can't do it. Don't think that he can't do it."

Anna Jaworski:

Very good advice. Rick is a wise man.

Aubrey Byrnes:

*laughs* I agree.

Anna Jaworski:

What I loved was just what you were saying earlier. I think in the first segment you were saying that if Wyatt's playing on the floor, pushing the cars that Colton wanted to do that. It was the same way with Joey and Alex and so there were a lot of times I didn't even have to worry about physical therapy because I knew that Alex would be copying every single thing Joey was doing and Joey was a really physical kid. So that ended up working out really well and Joey was so good. My kids are three years apart so I could enlist Joey's help probably a little bit differently than you can since your two boys are so close together. But I would say to Joey, Alex needs to practice blowing. Let's blow bubbles, let's blow pinwheels, let's blow dandelions. I mean we were just, we were constantly blowing when we were trying to work on getting air out and it was so wonderful how Joey was right there with Alex the whole way. He was very sweet and encouraging and challenging. He would definitely challenge him and then he would pin them to the floor and I tried not to have a heart attack when they would wrestle on the floor cause Joey was so much bigger than Alex was. But you know what, that's part of it. And I wanted them to have a normal sibling relationship. And it sounds like your two boys have a very normal sibling relationship as well.

Aubrey Byrnes:

Oh, very much so. And Wyatt is Colton's biggest cheerleader when he would come to therapy with us or he would come to any doctor's appointment, Wyatt is literally on the side clapping and cheering and being the best big brother. It's something that can't be taught. It's something that he just knows and I couldn't be more grateful.

Anna Jaworski:

Oh absolutely. And you'll see, I think this kind of experience being raised with a brother who does have special needs, it makes our older children or other children. If your heart kid is the older one, it makes the other children so much more compassionate than so many of their peers who aren't living with that kind of situation. And I think it made Joey into the great man that he is today. Well when I was reading about VACTERL Association, because honestly I didn't know a whole lot about it. I read, you know how of course every child is different, we all know that. But that a child only needs to have three of the types of problems listed to be labeled with VACTERL Association. How helpful is it to be in a support group when you know that parents there are going to have children with all different kinds of problems?

Aubrey Byrnes:

I think that even though you only have to have three of the conditions, you're still going through a similar situation and there are people who are in these groups that are, are in the support groups that I'm in who might have three of the seven conditions and two of the three are the same that I have. And so it leads me to think, oh, maybe I need to be asking that type of question or maybe I should be considering this. Um, and it also opens your eyes to maybe there's something more going on. Like Colton at this point isn't potty trained and I never even thought maybe it was an anal atresia issue or maybe it was a renal issue. I've never considered it until one day I posted in one of my support groups that said, how do I get my four year old to be potty trained? What is going on? What is the problem? They were like, part of the issue is being an anal atresia or renal, maybe you need to get that looked at. If I didn't have these support groups, I would have waited months till I saw my doctor to ask these questions. And so I think it is beneficial to be in support groups that don't necessarily have the exact same condition that Colton has, but can open my eyes to other issues.

Anna Jaworski:

Absolutely. I think that's brilliant advice and I never would have thought that that might contribute to the potty training. He's not potty trained for either urinating or defecating?

Aubrey Byrnes:

No, not at this point.

Anna Jaworski:

So you had said that he's in preschool though, right?

Aubrey Byrnes:

Yes, he goes to preschool. This will be his second year.

Anna Jaworski:

And that's not a requirement?

Aubrey Byrnes:

No, not until you reach kindergarten.

Anna Jaworski:

Oh, okay. So have you had a chance to talk to your child's doctor about this?

Aubrey Byrnes:

We have. We just recently had back surgery for his second de-tethering of his tethered spinal cord and brought it up because these groups told us maybe this is an issue. And so now we're in the process of doing testing and bladder control and function and all of those tests. Because some mom was like, you should ask about this.

Anna Jaworski:

It seems like Colton likes to work with you, likes to please you. I don't get the impression that he's not using the potty because he's being stubborn that way.

Aubrey Byrnes:

No, no. And when Wyatt says, oh, I have to go to the bathroom, and he goes running into the bathroom and then Colton will say, oh, I do too. And then he just doesn't have to go. There's a wide range of reasons from the VACTERL perspective of why a kid wouldn't or can't go to the bathroom. And so it can be simply as simple as needing miralax every other day because things are just stuck to, maybe there's a turn in the bowel and things just aren't working as you expected them to. And so that's why we're doing all this testing, thank God for medical staff and medical knowledge that has all these tests available so that you're not just trying everything under the sun. They can pinpoint what the problem is and then work on a solution.

Anna Jaworski:

Well, I thank goodness that you're an educated mother who obviously loves your son. You're not shaming him."You could, if you would just try", you know how some parents do. It doesn't sound to me like he's willfully not trying to do, especially if Wyatt says, oh I have to go potty and he says me too. But it sounds like he doesn't really have that sense of urgency and he's not being able to read his body. So it sounds to me like what you said, maybe his body isn't giving him those signals. So if it's not giving him those signals, of course he can't control it, wow.

Aubrey Byrnes:

Right.

Anna Jaworski:

Okay. That would be a big issue. Potty training... Potty training and eating, you know those are two really big issues. That sounds great. He got rid of the g tube. That's great. So I wish you luck with all this you're going to have to keep me posted. This might be something we have to do another show about some time because yeah, really potty training is a big issue for a lot of parents.

Aubrey Byrnes:

Potty training should be its own class, I think.

Anna Jaworski:

I know, right? And every child is so different. My potty training regimen with Joey was so different than my potty training regimen with Alex. I think every child is different. They all respond differently. And our kids have been through so much with the surgeries and Colton is his own little universe.

Aubrey Byrnes:

He's like his own island. We, we totally understand that. He is like, oh, he's very much like, we don't really fit in the heart family. We don't really fit in the VACTERL. We're not really in this field. We're kind of just like touch on all the islands and then we make our own. So.

Anna Jaworski:

yeah. Well, it's a challenge when you have a child who has so many different conditions. So have you or any other families become involved in any of the research or treatment initiatives for VACTERL Association?

Aubrey Byrnes:

Colton is currently in two different studies. One of them is genetics related. And why does he have so many heart conditions? Why does he have VACTERL? Like all of those things. Is there a genetic link to him that they just haven't found before? Um, so he is in quite a few of those studies, blood work, seeing how he progresses from birth to age five to age eight. As in what looks different. But then he's also in a prognosis study locally just to see Colton's one of a kind where we're from. We're in a really small town in South Dakota.

Anna Jaworski:

Honey, I think he's one of a kind anywhere.

Aubrey Byrnes:

Yeah, to see. Kind of like from birth. I mean we were told prepare for a funeral. He's never going to make it to... He's one years old. Like this is as good as it's going to get. Now, he's going to be five next year. And I think doctors are like, yeah, I don't know. You tell us because I don't know what to do. And so it's more of a local study and not per, so just to VACTERL but Colton as a whole. How do each of these conditions play out?

Anna Jaworski:

Kind of like a case study. Okay. Wow. Well. And the great thing about this is even if there's not another child born who's just like Colton, which I would warrant, there's not going to be another child born just exactly like Colton. At least they can see our progression of, okay, this child was born with all of these heart conditions and dysfunctional spinal column and X, Y, and Z that he was still able to walk. So that if there's another family who has a child who has some semblance of those conditions, instead of giving them the dismal, horrible prognosis she were given, they can say for it. You know, normally you would think this is really awful, but we've had this one little boy and he's able to do X, Y, and Z, you know, so we'll give a family some hope. And I think that is where you being such a strong advocate coming on a program like this, reaching out to people in the Facebook groups, that's what makes you so special, is that you're willing to provide this information to give other families hope.

Aubrey Byrnes:

Yes. Yes. And that's, that's what we try because we were told so many times that Colton would never do anything. If you saw him on the street, you would have no idea. You can't see the scars that make him who he is. He would be just like every other four year old on the street. That's what I want other families to know that yes, we've endured and we have been on the journey of a lifetime, but I wouldn't trade Colton for a healthy day in my life because he has opened my eyes to so much and brought me to so many great people, so.

Anna Jaworski:

No, I love that. Well, thank you so much for coming on the show today, Aubrey, and helping us to understand a little bit more about this very rare disease VACTERL Association.

Aubrey Byrnes:

Thank you so much for having me. It's been a pleasure.

Anna Jaworski:

That concludes this episode of Heart to Heart with Anna. Thanks for listening. Today my friends find us on Youtube at Anna Jaworski j a w o r s k I, and subscribe. And remember my friends, you are not alone.

Outro:

If you've enjoyed listening to this program, please visit our website heartsunitetheglobe.org and make a contribution. 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 educate, 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@congenitalheartdefects.com for information about CHD, hospitals that treat C HD survivors, summer camps for CHD families, and much, much more. Thank you again for joining us this week. We hope you have been inspired and empowered to become an advocate for the congenital heart d efect community, Heart to Heart with Anna, with your host Anna Jaworski can be heard every Tuesday at 12 noon eastern time.

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