Hayden's Heart
Podcast #73 — Aired November 16, 2015

This week on BetterWorldians Radio, learn how a baby boy named Hayden inspired a nonprofit that is improving the lives of families in need. Our guest this week is Ady Dorsett, co-founder of Hayden’s Heart. Ady will tell listeners about the life of her son, Hayden, and how he inspired the foundation that is raising money and awareness for families dealing with Congenital Heart Defects.

 

 

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Ady Dorsett
Co-Founder, Hayden's Heart

Together with her husband Rob, Ady Dorsett is the founder and director of Hayden's Heart INC. The Dorsetts started the foundation just a few months after their son, Hayden, passed away to help keep Hayden's memory alive and help raise awareness for Congenital Heart Defects. Ady serves as a liaison between the foundation and the heart community and has her hand in all aspects of the foundation from hosting events, mailing out apparel, supporting and communicating with fellow heart moms, and much more.

Episode Transcript

Raymond Hansell
Hi, welcome to BetterWorldians Radio. BetterWorldians Radio is a weekly broadcast whose mission is to uplift and inspire you to make the world a better place. Im Ray Hansell joined today by my co-host and life partner MarySue Hansell. This week on BetterWorldians Radio were talking about Haydens Heart, a nonprofit with a mission to raise awareness of congenital heart defects. Our guest today is Ady Dorsett, the co-founder of Haydens Heart. Together with her husband Rob, Ady founded Hayden's Heart just a few months after their son, Hayden, passed away at five months old. The mission at Haydens Heart is to raise awareness of Congenital Heart Defects known as CHD, and to keep Haydens memory alive by helping families affected by CHD. Haydens Heart achieves this goal by hosting numerous fundraisers each year in memory of Hayden. Now lets welcome Ady and MarySue.

MarySue Hansell
Hi Ady.

Ady
Hi, how are you?

MarySue Hansell
Great. Now could you please tell our listeners about your son Hayden?

Ady
Absolutely, Id be honored to. Hayden was prenatally diagnosed at his twenty-one month week ultrasound with a severe congenital heart defect called hypo-plastic left heart syndrome, which basically means that the left side of the heart is severely underdeveloped and he would be born essentially with half a heart. So he was born on March 12th, 2012, eight pounds one ounce seemingly healthy, he would sit on my chest like a normal newborn and then about a minute later he was rushed away he started turning blue from discoloration of oxygen levels, and from then on the normal part of his childhood and life was kind of over. He had open heart surgery when he was three days old to correct, you know, start the procedures of correcting his heart. Seemed to do very well through the actual procedure, and then we went home for awhile, spent a lot of time together, and we came home, and then we went back to the hospital at one point for a month, and he really started to become him, he started to smile a lot, and you know, just become a normal baby. Even in the hospital he laughed a lot and smiled, and really just blossomed there, and we got to know his personality and know more about him, and he developed this, you know, he had orange hair that just kept growing, and was one of his signature parts to him.

MarySue Hansell
Oh geez.

Ady
Which everyone thought was pretty funny and loved about him, and he just smiled a lot, he was just a really happy baby. You know, talking about Hayden, I want to make it about what he was, not just that he had this, you know, severe heart condition.

MarySue Hansell
Exactly.

Ady
But that he was just a really cool baby, and he just lived off of people, and met, people who never even met him, he barely met anyone because he was sick, so we kind of sheltered him in that sense, but we were home for some time, we were in the hospital for some time throughout his life, and he was really, just a really cool kid, and he unfortunately passed away when he was five months old. He had a little bit of, his oxygen levels were decreasing after his second heart surgery, you know, some sort of surgical procedure that didnt go the way it was supposed to, and he unfortunately passed away when he was five months and four days old, and what I want people to remember him by was, you know, his smile and how amazing he was, and not that he, not his tragic ending, more so what an awesome kid he was.

MarySue Hansell
Well you know Ady, I did see pictures of him on YouTube, there was a very cute video there if the listeners want to look at that, he was adorable. So how did the idea come about to start Haydens Heart?

Ady
So after he had passed away, we, you know, we had a Facebook page for him, a page for baby Hayden I had started when I was prenatally diagnosed, just to kind of get support and I just didnt really know what else to do, so I just started this page for him, and it, you know, developed and we kept family informed through it and our friends, it got kind of old kind of saying doctors report every time we went to a prenatal, you know, appointment. So it was just kind of our way of spreading, you know, his story really. It ended up becoming much more than I had planned on, and you know, a couple weeks after he passed away there was over twenty thousand followers on his page, and it was kind of like whoa. You know, so many people know him that I dont even know and it just felt like, that would be silly to, you know, for lack of better terms, to waste that support, you know. So one night we were just kind of sitting there and I felt really sad and depressed obviously and was just kind of walking around in circles trying to figure out what to do with my life now, and just felt lost, and thought hmm, we should do something with all of this. So my husband came up with the name, Haydens Heart, and we said okay, lets just do it, lets just go with it and see what happens and it was really thrown together really quickly, and you know, we didnt know what we were doing, we knew right away that we wanted to keep his memory alive and we wanted to help heart families, and you know, we kind of developed our mission pretty easily, it was, you know, not difficult. But it was very much thrown together.

MarySue Hansell
Yeah, share, share with the listeners what the mission is there at Haydens Heart.

Ady
So our mission is, you know, theres a couple of key parts, you know, first and foremost to raise awareness for CHD, congenital heart defects are, I didnt know anything about them until I was diagnosed with Hayden, and no one in my family or friends knew anything about them. I mean this was our first exposure and found that for a lot of our followers it was their first exposure, so raising awareness for congenital heart defects and CHD is such a huge part of our mission, and just getting it out there, you know, if people dont know about it they dont know how to help, so thats a main part. Another part is keeping Haydens memory alive, thats huge for me as his mother just because hes not here anymore, so I have this horrible feeling of him being forgotten and so this is kind of our way that he will never be forgotten, obviously through my family, but you know, through our supporters and followers and all of thats here. So, thats another big part of our mission is just keeping him going and then I guess the clutch of it is all just to help families that are effected by CHD in some manner, whether it be financially or emotionally, just supporting them. And its a tough journey and we lived it for a very short time, but, you know, we lived it so we know that it can be, you know, difficult so we want to be able to help families whatever that means to them.

MarySue Hansell
Sure. So how do you achieve that mission?

Ady
So we do host the six large fundraisers, every year we, theres slightly still changing, but primarly we do, we host six and we raise a lot of money at those. So we choose a heart family for each event to honor, and we financially support them pretty substantially through that event. So each, so its about six families that we honor a year, and we also send, you know, smaller denominations throughout the year, we have a budget for that too, for families that are in need of some help right away, you know, if theyre traveling to a different area to get help for their child, we want to be able to help them with their hotel costs or, you know, whatever that means to them. So we do that also, so theres more than just that.

MarySue Hansell
That must be a big help. Yeah, that must be a big help when people are having all of that problem and traveling, and going to hospitals, so theyre probably very, very grateful for that. Ive read that you send packages to families too, what are in the packages?

Ady
So thats a definite other part that we do to achieve our emotional support more so I guess.

MarySue Hansell
Yeah.

Ady
We send three times a year to four different hospitals that are, you know, servicing cardiac children, they have a wing of their own. So we send a few things in a care package to them, its comprised of five of Haydens favorite things from when he was here, and we send its like baby-aged, under a year, and we send care packages to those same four hospitals for his annual anniversary, which is the day he passed away, and we kind of circle that around what he would enjoy, cause he would be three and a half, so we send like Play-do and activities and stickers books, and things for the kids there.

MarySue Hansell
Oh thats nice, yeah.

Ady
Yeah. So we call them our smile sacks, because its in the middle of the summer so it kind of stinks if youre in the hospital as a three year old anytime, but, you know, you want to go out and play on the beach and things, so.

MarySue Hansell
Yes, Play-dos always great.

Ady
We send them for, just to brighten them a little bit, and it kind of brings a little brightness to my day, which can be a helpful way to get through, so thats the second one. And we also send, which were preparing for now, which is our holiday care packages, which we kind of try to encompass the whole family, we do you know, for the parents, some things that we found we needed in the hospital days, and something for a sibling if there is one and also for the actual child.

MarySue Hansell
You know, Ive read that each year you host a Heart of Gold Gala, sounds great. Whats that event like?

Ady
So this is an actually, this coming year is our first for the Heart of Gold Gala. This is our, hoping to be our signature event, its something that we are very excited about. It is going to be a silent auction, a very formal silent auction event. We are honoring AP doctor cardiologist from the Childrens Hospital of Philadelphia, which is where Hayden was cared for, and were just hoping to come together and kind of honor the whole heart community, and this cardiologist and Hayden and all of the heart children as a whole, and just raise a lot of funds and a lot of awareness and try to do something you know, everybody likes to get dressed up.

MarySue Hansell
Yes.

Ady
And be fancy for a good cause.

MarySue Hansell
Right. What month was that Ady?

Ady
That will be, its at the end of September, September 30th, 2016 is our first inaugural Heart of Gold Gala.

MarySue Hansell
Well look forward to that.

Raymond Hansell
Were going to take our break right now. When we return my co-host MarySue will talk more with Ady Dorsett, co-founder of Haydens Heart. By the way in the spirit of the holiday season, our game on Facebook is now one hundred percent free until the end of the year and its called A Better World. Its a popular social game that rewards players for doing good deeds while helping to raise money and awareness for charities. So far over thirty-five million good deeds have been done in our social game called A Better World by more than three and a half million people. Through January 1st the only currency accepted in the game is your acts of kindness and other social good that you can do. Were also challenging players to perform one million good deeds by that same time frame by the end of the year. And when they do, A Better World will release funds to provide new coats for children in need nationwide through Operation Warm. Well be right back with MarySue and Ady.

Raymond Hansell
Youre listening to BetterWorldians Radio. Were speaking with Ady Dorsett, co-founder of Haydens Heart. Now heres Ady and MarySue.

MarySue Hansell
Hi Ady, we were just talking about the different events that you hold. And now another one you hold is called the 5k. Whats that one all about?

Ady
That is Hayden, we host that around Haydens birthday, so that is actually Haydens birthday bash, we actually call it the 5k Birthday Bash for Hayden. We host it in the middle of March, which is right around his birthday, and, you know, it is what it is, its a 5k, its a run for a lot of people that come very competitive and ready and run, and get a good time, and get a medal or whatever they are looking for. But its also a walk and a family event as well. So we have, you know, those who are running to get a good time, and those who are just walking to be with their family, and we also have a kid fun run, so theres a mile I think for the kids fun run, for those that can, just trot idea.

MarySue Hansell
Oh thats nice. Where do you run? Wheres it located? Where do you run?

Ady
Its in North Arlington, which is where we live, its at our local park. And they kind of run throughout actually throughout town, the police around here and the fire department are all very supportive, they block off parts of the town for us and make a nice pathway for our supporters, and runners and walkers to participate. And its kind of a whole town event at this point.

MarySue Hansell
Great. Now you recently hosted a retreat for grieving mothers last month. Can you tell me about that?

Ady
Yes, that event kind of like the whole foundation started, kind of came out of nowhere basically. I truly do believe that Hayden puts ideas in front of me, or inspirations in front of me in his own way, just to give me a little more push of something to do. So this came about, I think the middle of the summer, the middle of June and we threw it together in a few months, it just was something that I had a seen a mother in Canada, a grieving mother in Canada was putting together a legacy for her son and I just knew we had to have one here, because I felt if I feel the way that I feel, and in a world that, suddenly alienated and alone at times, just based on the lack of people that know where I come from, which is great, I dont want more people to know where I come from, but just feeling that if I feel that way that other mothers like me must feel the same way. So I, together with my husband and another friend of ours, we put together a retreat for, it ended up being twenty-four grieving mothers, and we did, we held it in the Poconos of Pennsylvania, and it was just, it was a retreat center that we just felt was, you know, outdoorsy and comforting and secluded. So people came from, mothers came from all over the country, from California, Washington state, Texas, you know, all over to join us for this retreat and it was really, way better than I could have ever dreamed of, it was the connections and bonds that we all left with after like forty-eight hours together was just incredible, and I dont know, it was something I could never of imagined, honestly.

MarySue Hansell
Thats wonderful. How did they find out about it, on your Facebook page or?

Ady
Yes, I posted it on our Facebook page and on our website, and theres also those private Facebook groups, so theres a group of grieving moms on there that I posted it for, and it filled up incredibly quickly. Were already, a friend of mine that helped coordinate it, are already starting to host, plan you know, the second annual, just because it went so well. So many moms can just use this type of an environment, just for a couple of days to talk about their child which is a rarity at this point, you know.

MarySue Hansell
Oh yes, I can imagine that. Now how has starting and running this retreat helped your own grieving process?

Ady
The retreat, oh its, you know, we talked about that at the end of the retreat, everybody talked about what they took away from the retreat and I hadnt really thought about what I would take away from it, more so what everyone else would, and how it would help all of them. But the way that it just helped me just see them and connect, and my own connection was just incredible as far as, you know, knowing what help our foundation as a whole was bringing toward, to these mothers and just the community at large was just is overwhelming.

MarySue Hansell
What is your message and advice to families grieving the loss of a child?

Ady
I think grief is, is for whatever it is for you, I think its important to just stay true to yourself in your process and know that whatever youre doing and however youre grieving is not wrong. If that means you need to, you know, stay to yourself, thats what you do, if you need to be open, then thats what you do. I just think its very important that you be true to you and hopefully, you know, people wont judge and if they do then shame on them, but its important to stay true to what makes you feel okay with your own process and be unique to yourself.

MarySue Hansell
Well this is a wonderful cause. How can our listeners help support Haydens Heart?

Ady
There are several ways the listeners can help support us, theres the obvious of a donation in monetary form on our website, theres a contribute page that explains how to donate monetarily. But theres also other great ways to support, if youre anytime local to our events, you know, and coming to an event and just showing support in that manner is just huge to us, we love having new faces and meeting new people and supporters that just come by, and we have blood drives that people can help out with. And theres just so many events that you can help out with in that sense. But we also have the care packages and a lot of organizations or families will contact us for their childs upcoming birthday and say, you know, our child wants to, we want to teach them a lesson on giving back, so wed like to send items for your care packages in lei of birthday presents for the birthday party or you know, schools will call and ask if they can host a denim day to just raise awareness and funds for us, or even just a regular fundraiser, people have hosted in their areas just for our community, so thats a large part of how listeners can help support us.

MarySue Hansell
Now Ady here is a question we ask all of our wonderful guests every week. How do you hope the work youre doing through Haydens Heart is helping to make the world a better place?

Ady
I think that, I thought about this a lot, and I though that, you know, I know how it makes me feel good, and it helps our heart community feel good, because obviously what we do benefits the heart community. So I know how much of a blessing Haydens Heart is to myself and how proud I am, and how it helps the heart community. But as far as everyone else out there, I hear so often from our supporters how much they love supporting us, because it brings out the good in them. And it will give them an outlet and an opportunity to give back to something that they are passionate about, a child that they never met, that they love, and how this, their support helps people in serious need, in serious financial or emotional need and it makes them feel good about themselves, it allows them to teach their children a very valuable lesson on how to give back, and it just, Ive heard it a million times, it brings out the good in them and that its so inspiring and overwhelming to hear that what they do for us, which is so huge to me, also helps them, which is so cool.

MarySue Hansell
You know, its really interesting to hear you say that because we do a lot of work with the positive psychologists and the science they have proven out, and exactly what youre saying, by helping other people, you increase your own wellbeing and happiness. So thats a good lesson for all of us.

Raymond Hansell
Well you can learn more about Haydens Heart by going to Haydens Heart dot org. Ady, once again, thanks for joining us on BetterWorldians Radio.

Ady
Thank you so much for having me.

Raymond Hansell
Oh youre very, very welcome. As we end our show each week we like to share our mission here at BetterWorldians Radio. We strive to make the world a better place by encouraging the very best in everyone. We focus on positive thinking, positive values, and positive actions. In short, our vision is to bring out the BetterWorldian in everybody, so that we can all make it a better world. And so until next time, please be a BetterWorldian.