Chat with Olsens

Tell us about your son T.J.’s journey as a heart baby.

Greg Olsen: In 2012, my wife and I found out we were pregnant with twins. We found out early in the pregnancy that T.J. was going to be born with a very complex, critical congenital heart defect called hypoplastic left heart syndrome.

They laid out what the future held for him in the immediate term, and it was scary. We were very conflicted on where to get our treatment and what was the best course of action for our family, for our son.

That led us right here – in our own backyard – to Levine Children's Hospital. T.J. and his sister Talbot were born in October 2012, and T.J. underwent the first of what would become three open-heart surgeries and a few other heart procedures over the next two and a half years. We stand here today as parents of an almost 5-year-old boy who's happy and relatively healthy. We have a lot to be thankful for – and a lot of that thanks starts here at Levine Children's Hospital.

When your child goes into surgery, what does that feel like as parents?

Kara Olsen: I was completely heartbroken. There was no harder moment in my life – especially that first time at two days old – than having to hand him off to doctors and just hope and pray that he was in the best possible hands and getting the best possible care.

It didn't ever seem to get easier. I always want to talk to moms and say, "Just give them a hug.” I believe in the power of prayer. Through that time, we found a lot of faith. We said a lot of prayers, asked for a lot of prayers, and I think the city of Charlotte is really behind us.

What do you think about the doctors, nurses and staff who cared for T.J. while you were at Levine Children’s Hospital?

Greg Olsen: From our first meeting here, we were still kind of doing some due diligence on where we were going to receive our treatment, where we were going to have the kids delivered. From that first meeting, we immediately knew that this was the place for us. From that day until today as we sit here, the care that we've gotten from the medical team, from the support system and from the administrators has been world-class.

We don't only feel thankful for the doctors and nurses who actually touched our child – we just feel very thankful for the entire network, for the entire support system that this hospital and this healthcare system brought to our family at a time of need, a time of crisis. That's been a big inspiration.

That’s a very key part to why we feel as passionate as we do about supporting and giving back to not only this community, but specifically this children's hospital has a special place in our hearts – it always will. We're always going to try to find every possible way to impact the families that will come down the road.

Tell us a little more about the moment you decided to develop your foundation.

Kara Olsen: T.J. was discharged in November of 2012, and about a month later we brought a nurse to come live with us and to help with the care of T.J. I just thought it was very important to have professional eyes that live in our home. Greg was in season. At that time, we had a 17-month-old son, and then T.J. and his twin sister.

Obviously just caring for healthy children is hard in itself, so we wanted an extra set of eyes on T.J. We called her Mama T – her name's Thadine. While she was living with us, I said, "Greg, this is why we're given this journey. Let's provide this care to all children treated at Levine Children's Hospital."

Greg Olsen: And here we are.

Kara Olsen: Here we are.

Greg Olsen: That conversation has led us down the past five years to where we are now with countless families served and countless dollars raised. The awareness has just really become a huge part of our lives.

It's something that we spend a lot of time on. It's something we have a lot of passion for and commitment towards. We're always trying to find new ways and new avenues to connect with families and new ways to bolster the care provided here at Levine Children's Hospital.

What exactly is The HEARTest Yard? What does it provide?

Greg Olsen: The HEARTest Yard was originally inspired by Kara bringing in our own private-duty nurse. We said, "Okay, not everybody has the ability to fund this themselves." It's very expensive, and a lot of people can't handle those expenses. Well, what if we take that off the table? What if every family can pick and choose, and the doctors can help coordinate exactly what the specific needs are – starting with the child and what their health needs are?

We can coordinate a package of care – of therapist and nursing care, during the day and at night. The difference was we can tailor it for the families and their specific dynamics of home life and social life. Whatever the dynamics are within that family, we can be very sensitive to that as well. This two-prong approach of the care of the child and the social dynamic of the family – attacking it from both of those areas – has led to just incredible results.

The HEARTest Yard privatizes that entire in-home healthcare package, and we fund all the bills. Every bill that's paid out of that program, we’re responsible for funding. The hospital and the team of administrators that work on behalf of The HEARTest Yard – interacting with the families, coordinating the staff – the needs of the family are covered. The hospital, healthcare and insurance companies – nobody ever sees those bills. That's what we've built up until this point. That's kind of the framework of how The HEARTest Yard has taken off.

What is The HEARTest Yard hoping to do in the future?

Greg Olsen: As The HEARTest Yard has kind of reached its capacity in its original form – being a specific in-home healthcare providing service – our thoughts were always, “Where do we go from here?" We’ve always tried to think bigger. We've always tried to think what the scalability of this program is. We've had hospitals around the country – both locally and on the other side of the country – contact us about replicating The HEARTest Yard and bringing this sort of program template to their medical systems. For a while there, we thought that was our future, maybe that was the goal of The HEARTest Yard.

But just a few months ago this spring, at our annual meeting with the hospital team, the idea was floated about where the future of healthcare was going – specifically in the cardiac world for pediatrics, and the concept that more babies are surviving. The acute care has become so good because of these surgeons, nurses, doctors and hospitals that more and more babies with critical congenital heart disease are surviving. But as a result, more are entering the world, more are entering the school system, more are entering society. And we're seeing, unfortunately, they're having some struggles.

There are some neurodevelopmental struggles. There are some social struggles. There’s a variety of care that's needed for these children to not only live – but to thrive. The opportunity presented itself because of the amazing support here and some of the work of our foundation. We’re able to all come together and, in essence, bring to this region what only a few hospitals in the country have – what we’re calling a neurodevelopmental program for the cardiac patients.

We’re bringing all these multi-disciplines under one roof, coordinated by one staff, one person who knows all the needs of your child, as opposed to a fragmented nature of care – this is what the future of these children's care will be. We're very excited about it. We think it's going to make a huge impact on our community and a huge impact on this population base at the hospital. We're really excited to kick it off.

Tell us a little bit more about this next phase of The HEARTest Yard.

Greg Olsen: I think as The HEARTest Yard continues to grow, the way we see it is we started as an in-home nursing company. We started as an in-home privatized medical care type program, and that's how we found our footing and got our legs under us a little bit. In the past, we’d seen patients from discharge to say a month or two old. And it would take you through your subsequent follow-up surgeries. You're talking 6 to 9 months of age. Our program moved on to other families – there was really no need for us. Our child was recovering, he was a little more stable, he was older, and he didn't need that full around-the-clock care that he needed when he first got home in that transition.

Now, right when that early phase of The HEARTest Yard ends, this next phase picks up and transitions you into sort of an outpatient role – but still under the guise of The HEARTest Yard and still a program where we wrap our arms around you. We're going to follow you from the moment you get discharged, indefinitely. These congenital heart patients are seen up into adulthood. They can all still continue to be seen by this neurodevelopmental center. For us, that's really exciting. It gives us a way to wrap our arms around these families and provide them the care and support that they'll need – not only just on the acute side, but for the long-term. For us, that was kind of the aha moment to why this made so much sense. It was such a seamless transition from the work we were already doing. Let's stay involved with these families longer. I think this center achieves that.

How will this program help families reach their full potential?

Greg Olsen: When the hospital presented us with the concept and with a few research studies done by some big organizations and medical centers, Kara and I immediately went home and dove into the research online. It's staggering when you look into it – the correlation between early childhood cardiac surgery and long-term developmental growth. The statistics of cardiac kids with congenital heart disease that repeat a grade, struggle in school or struggle to adapt socially are through the roof.

Now to have something that hits that dead on, which is the overall mission of this program, makes so much sense to us. We’re not doctors, we're not going to go in those rooms and do the surgeries, but what we can do is this: you're living now, you're surviving, you're going home – but is that really the quality of life we want to see these kids have? I don't think the answer is yes. I think there's a lot of work left to be done, and I think this center's a great start in addressing that.

Will this program specifically help T.J.?

Greg Olsen: It will. As of now, we visit T.J.'s pediatrician. We come to Sanger Heart & Vascular Institute and visit Dr. Herlong and his team of cardiologists. T.J. has some speech issues so we go see a speech therapist. His care is great, but the right hand doesn't always know what the left hand's doing unless they have a mother like Kara who fills everybody in.

Well, not everybody has such a strong advocate. Unfortunately, that's just the reality. So, let's take all that off the table. Let's centralize the care for every type of possible issue your son or daughter may have, and let's bring it under a specialist who oversees multidisciplinary care, specifically for cardiac patients. T.J. will be one of those kids.

We'll be able to bring him into the program, let him be seen, let him have all the things he needs to thrive and continue to get better – it will all be done right on site. So yes, this is something our son will personally experience, as well as hundreds of other families around the area that have been served here at Levine Children's Hospital.

What does it mean to you to know that you're able to bring those resources to other families?

Kara Olsen: Well, when this idea was presented to us, I was so excited. I said, "Listen. As a mom, if I didn't have other children, I wouldn't know what's okay for T.J. and what's not okay for T.J." I always say T.J.'s greatest blessing is his two siblings because I kind of have an idea of T.J should be doing this, and T.J. should be doing that. I remember saying to the pediatrician, "Is his speech okay?" And they'd be like, "Yeah, he's fine." But they only saw him for 20 minutes, say, once a year.

This center will have benchmarks for the kids that need to be met. They'll know them from infancy, hopefully, and they'll just be really in tune with each individual, which will be ideal.

Some say this program would not be possible without the support of The HEARTest Yard. What does that mean to you to know that you are spearheading this?

Greg Olsen: It's incredibly humbling, and it's incredibly satisfying. When we found ourselves in this situation with T.J., we started asking, “Why? What’s the purpose behind this?” The HEARTest Yard has really answered a lot of those questions. Our ability to pour ourselves into this foundation and this program specifically, to see the growth of The HEARTest Yard up to this point, and now to see the possible rapid expansion we could see going forward – it’s probably the highlight of our lives.

It's really something that we feel that strongly about, and we feel very fortunate that we're in a position to do it. We feel very fortunate that we have the platform, support system and resources to pull it off. We really feel like this is going to be a project that's going to make a lasting impact on this community and specifically this medical system. We're very excited to kick it off and get going and see what the future holds for The HEARTest Yard.

You could choose to have your foundation support anything that you want, anything in the whole world. Why Levine Children's Hospital, and why this program?

Greg Olsen: At our greatest time of need, we had only lived in Charlotte for a few months. I had been traded here about six months prior to finding out that we were pregnant with the twins, and we could've gone to any medical system in the entire country. We flew around. We spoke to everybody at every leading pediatric cardiac center in the country. We spoke to them, and all eyes and all signs continued to point us back here to a town that we knew very little about.

Upon meeting the team for the first time, and then obviously setting down that journey of T.J.'s treatment and the subsequent care, it all just came together. We said, “We moved to Charlotte. It was meant to be for us to live here in Charlotte, for us to be a part of this community, and for us to be a part of this hospital."

It's just one of those things that when you know, you know. When it feels right, it feels right. And this has felt right for the last five years and hopefully for the next 50 years. This is something that we're very committed to. This is something that we feel very strongly about, and we're going to do everything we can to make it grow as rapidly as possible.

How’s T.J. doing now?

Kara Olsen: He's doing great. He's in junior kindergarten, so he's now in the same class as his twin and at school with his big brother, which was super exciting. He’s thriving, playing tee-ball, participating in flag football practices – he’s just happy and loves life.

What do your other kids know or think about T.J.'s heart journey?

Kara Olsen: They're super sensitive to it. I always say it made our other two kids super compassionate. You know what I mean? For example, our twins are having their 5th birthday party in a couple weeks. They don't want gifts. They want the money to go to Levine Children's Hospital.

As a mom, it makes me so proud. Like Greg said, there were so many questions of why we were given this journey early on, and so much of it I thank God for now.

What are your hopes and dreams for T.J. and all of your kids as they grow up?

Greg Olsen: Just to be happy. Find something that they really enjoy. Find something that they feel very strongly about – and pursue it. I think that's every parent's first wish. Whatever that is, find it. We try to expose them to as many different things as possible with the hope of something catching their eye. They're still young and still trying to find their way for a while longer. I think we just want to see them happy, see them find something that they want to do.

I think people talk about, "I want my kids to be successful." I don't know what that means. I think success can be measured in so many different ways, and I think it starts with just feeling good about themselves, feeling good about their place in the world, finding something that they really enjoy and pursuing it. And from there, see where it takes you.

What do you want people to know as they learn more about The HEARTest Yard and this program?

Greg Olsen: We’ve been at the tip of the spear of this whole effort of galvanizing people along with many others, and we’ve realized how fortunate we are to have this children's hospital. And even on a smaller scale, how thankful we are to have this cardiac program. The reality is no different than it's been for the last five years. This has not just been Kara and me. We didn't just write a check, walk away and say, "Hey, go do your thing." This has taken community efforts, fundraising efforts, partnerships with individuals, companies, endowments and pledges. This has been a community-based project that Kara and I just happened to be at the forefront of.

That's been the entire process of erecting this entire building from scratch. The amount of people – from the Levine family to the DreamCatchers – who have contributed to the success of this hospital are too many to count. The same approach is going to have to be taken to achieve the goals of what this program is going to be all about.

Kara and I will be at the forefront of the fundraising, of the donations, of all that – but we're going to need community support. We're going to need people to understand and wrap their heads around what sort of impact this can make on our population group and say, "You know what? I want to contribute. I'm in a position where I can help." It can be $5. If everyone comes in, we can make such an impact on these kids' lives, and they deserve it. They deserve every opportunity to live their life no different than everybody else – but they happen to need an extra hand along the way.

I think as a community we've shown that we have a lot of very passionate people about children, we have a lot of passionate people about this hospital, and we hope to be able to attract those people to our program.

How can people donate?

Greg Olsen: Donations can come in a lot of different ways. They can just go to our website, r4r.org, and make an online pledge. They can write us checks. They can come to our events. They can come support our 5ks. They can take sponsorship groups. We do a lot of employee gift matching from some big companies here in town.

There are so many ways to get involved, again, all the money ends up in The HEARTest Yard fund here at Carolinas HealthCare Foundation. $0.98 of every dollar we've raised over the last four and a half years has gone directly to the program – and that's our goal. That's something we feel very strongly about, and we feel like that's the respect we have for the people who give their hard-earned money to support our families. We're very committed to that approach. We'll take the support any way we can get it, but we all know that these things cost money, and these programs are not cheap. To recruit the talent that we need to run this the right way is not cheap. We're committed to finding a way to make this happen.

Over the years, you’ve met hundreds of kids who have congenital heart defects or different diagnoses. What has that been like?

Greg Olsen: I think the biggest thing that we've discovered is a lot of perspective – a perspective on life, a perspective on what's really important, but also a perspective of what courage is and what toughness and perseverance are. Starting with T.J., and now through the countless families and children we meet, their positivity, energy and courage – and what they face on a day-to-day basis and don't even blink – is incredible.

These kids handle all this stuff better than the parents do a lot of the time. They're in there getting IV's, having tests, and they're just sitting there like it's just a day at school. Meanwhile, we're sitting there – we’re a nervous wreck, and we're worried. And they're handling it better than we are – that seems to be the norm with T.J. and everybody else we've met.

These kids are very inspiring. You spend one day around them, and their energy is contagious. We feel very fortunate and blessed that we've been able to meet a lot of these families, and they've given us as much in return as – if not more than – we’ve ever given them. That's something we've always tried to keep in mind and something we've always tried to keep at heart.

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