Home Lifestyle The Hoboken Resident That Inspired Kaia’s KindHearts

The Hoboken Resident That Inspired Kaia’s KindHearts

by Danielle Farina
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There’s something to be learned from a child’s resilience. When a kid falls from the monkey bars or trips over their shoelace, sometimes it feels like they almost bounce right back up. Though there may be a few tears (and lessons learned) they are soon off again on the next adventure. One Hoboken family had more to conquer than a tumble on the playground. When local resident Leigh Cole was pregnant, her yet-to-be-born daughter, Kaia, was diagnosed with dextrocardia — meaning, Kaia’s heart was on the right side of her chest — among other heart complications. Inspired by their daughter’s bravery, Leigh + her husband started a fundraiser called Kaia’s KindHearts to help support other children with similar diagnoses. Read on for more about Kaia’s journey and how you can support Kaia’s KindHearts during American Heart Month. 

kaias kindhearts

(Photo Credit: Leigh Cole)

This past August, Kaia underwent a major heart surgery that held her in the hospital for 14 days, her surgery lasting 24 hours. For Leigh and her husband Ron, resilience seemed impossible in the face of this ominous diagnosis. Though she still needs to be monitored, Kaia is able to live a happy, healthy childhood and faces the world with the same bravery with which she was born. In honor of her rockstar recovery, her parents have started a fundraiser called Kaia’s KindHearts (donate here!) that gives back to other children with Congenital Heart Defects by way of the Children’s Heart Foundation.

As American Heart Month comes to a close, The Hoboken Girl spoke with Leigh to learn more about her family, their journey with CHD, and of course, Kaia’s KindHearts.

The Hoboken Girl: Can you give our readers a little background on Kaia and her experience with CHD?

LC: Kaia is our very happy strong brave 4-year-old who appears perfectly normal on the outside but has a very creative anatomy on the inside. Explaining what Kaia has is complicated – there’s not a neatly packaged way to say it all. Kaia has dextrocardia which means her heart is on the right side of her chest. She has something called scimitar syndrome and partial anomalous venous return which basically means she has some veins in her heart going the wrong direction which is why she needed heart surgery. She also has a hypoplastic right lung which just means her lung is really small – about half the size of a regular lung. Long story short, too much blood was flowing to the right part of her heart and to her small right lung which put her at risk for heart and/or lung failure.

Kaia was born at the Children’s Hospital of Philadelphia because of her anatomy but miraculously did not need any interventions at birth. When she was 3 days old we were told she would need heart surgery before she was 3-years-old. That was a hard day. She’s been watched carefully and has had so many tests – numerous echocardiograms, EKGS, sedated MRIs, sedated CT Scans, and a sedated catheter procedure where they actually went into her heart to take pictures.

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Scimitar syndrome can appear very differently in different people and can be fatal – we are very lucky that Kaia seems to have a milder case. She showed very little symptoms until we put her in school and then we quickly learned Kaia has a hard time handling sickness and develops pneumonia quickly – a very common symptom of scimitar syndrome. She’s been to the ER multiple times every year, and we’ve had some really scary moments. Everything is just on another level with Kaia. A cough isn’t just a cough – we have to always be ready and watching and making sure we don’t miss anything. The stakes are much higher.

Since she was born it has been an up-and-down journey. We were told when she was three days old she would need heart surgery before she was three. Then when she was one, she had a very encouraging MRI, and we were told surgery may not be necessary. Then when she had more tests we were told it was inevitable but wasn’t a rush. Ultimately it was our call which is a very hard decision for a parent. I ended up connecting with other parents on a scimitar syndrome FB page (there are only 600 members worldwide because it is so rare). There I learned about a surgeon at Boston Children’s who is sort of the expert in Scimitar Syndrome. We ended up getting a second opinion from him and he told us to do the surgery within 6 months, so we did. That’s why we traveled to Boston Children’s for the surgery.

HG: On your website, you mention that you knew Kaia would have a heart condition before you had a name picked out for her. Can you tell us about the name Kaia and why that was so special to you?

LC: Kaia is half Filipino and the word “kaya” loosely translates to “I’ve got this” We liked the name Kaia before we connected the meaning in Tagalog, and once we realized that, we knew our heart warrior baby had a name. Because even pregnant not knowing Kaia, I knew it was all going to be okay. I trusted Kaia and knew she could handle anything. And it’s so true. She is such a fighter and does it with delight and joy. It’s incredible to witness.

HG: Kaia had surgery five months ago and underwent three surgeries in 24 hours. What were some of the things that got you and your family through that experience?

LC: I cannot express to you what it feels like once you’ve scheduled your 4-year-old’s heart surgery. The months of waiting – it was so hard. We did a lot to prepare which helped us so much during our experience even though what we went through was much harder than what we ever expected or prepared for.

One of the best things we did is we prepared Kaia, which unintentionally prepared us as well. We hired Randi and Jessica at Kids Cope Specialist in Hoboken, and it was by far the best thing we could have done to prepare. Jessica would come over 2-3 times a week and just play doctor with Kaia. She loved those visits! They did everything from preparing special books for Kaia to playing with the sedation mask (decorating it, blowing bubbles out of it). So when we were there in the hospital and the anesthesiologist said he was going to put a mask on her to sleep, Kaia was literally smiling ear to ear and so excited because she had practiced it with Jessica.

There are so many other examples like that, but it made everything we went through so much easier. They also prepared a doll that had every tube and bandage Kaia would have on after surgery and told my husband, Ron, and I what each was for. Just knowing – oh okay that tube is for drainage and that one is for medication and that one is a pacemaker that is standard protocol and will be removed – just helped that moment of seeing her after surgery so much. My gratitude for what they did to help us through two of the hardest weeks I’ve ever experienced is overwhelming.

cole family kaias kindhearts

(Photo Credit: Leigh Cole)

Another big thing that personally got me through was trying to maintain perspective and not fill the unknown with scary possibilities. This summer before surgery my therapist said to me “the definition of anxiety is filling the unknown space with the scariest possibilities. Just because it’s unknown does not necessarily mean it has to be scary. Stick with the facts. Surgery is scary and unknown, but it doesn’t mean she’s not going to be okay”. So that’s what I did.

About a year ago I posted something on the Hoboken Mommies FB page about Kaia and Jen reached out to me and shared that she has a CHD and had surgery when she was little. She shared an article she had written as an adult – a letter to her parents. I cried when I read it. I had been so in it just trying to survive that it had never occurred to me that one day Kaia would know. She’ll understand and appreciate what we did for her. It gave me such a perspective – one I hadn’t had before. I went back to Jen’s words many times while we were at the hospital. It helped me keep my perspective. One day she will know. One day she will understand. We’ll make it through this. I’ll be forever grateful to Jen for that.

Also, our support system got us through as well. It’s weird to be in a position where you need help. All you can do is say yes because you need it. It’s uncomfortable, but it’s also such an amazing experience. That is why we wanted to do this fundraiser. To give back to a world that gave so much to us – a world that helped us get through something that was unbelievably hard.

HG: Can you tell us a little more about Kaia — what are her interests and hobbies? What does she like to do for fun?

LC: Kaia is the best. She loves to eat – especially chocolate, any kind of fruit, and eggs. She is one of the tiniest kids in her class but eats the most.   She loves singing and dancing. She loves school and learning. She says her favorite color is rainbow because she likes all the colors. She says all the kids in her class are her best friends because she likes everyone. She was initially a very quiet kid and didn’t talk in Pre-K for 3 straight months – not one word. Her teachers are saints and so patient and now she won’t stop talking! She loves animals and threw a fit last night because we won’t get her a real cat!

HG: Since her surgery, Kaia has been in perfect health. How, if at all, does her CHD still affect your and her daily life, even though she’s healthy?

LC: Kaia has healed very well since her surgery – I am in awe of how quickly she’s healed. She had her surgery on August 30th and had complications where they had to go back in twice over 24 hours. Because of that she was sedated much longer than expected and didn’t wake up until September 7th, and because she was sedated so long we experienced something called delirium where she didn’t recognize us for a full day. It was awful. She also didn’t sleep the first 3 days she was awake. It was insane.

Even with all of that – she returned to school less than 4 weeks later. Our life is the most normal it’s been since she was born. She still has more doctor visits than the average kid, and she has a cardiologist and a pulmonologist at NYU with regular echos, EKGs, etc. We still watch her closely for pneumonia. We do chest PT on her 30 minutes a day every day where we basically have to bang our cupped hands on her chest and back. She handles it like a pro. Those cardiologist visits are always nerve-wracking – we know things can change on a dime, but for now, it’s all good and we take it day by day.

Her scar is something that was very hard for me to look at in the beginning but now it’s just a part of her.

HG: Can you tell us a bit about Kaia’s KindHearts. What it is, its mission, and its services?

LC: Right now the purpose of Kaia’s KindHearts is to just give back and help as many families who have kids with CHDs as we can. It originally was just supposed to be a one-time (maybe annual) fundraiser, but I can see there’s a lot of room to do more good and grow it so I’ll be working on that!

HG: When did you + your family first get the idea to start an organization in Kaia’s honor? How were you able to get it running from the ground up?

LC: My husband and I have held Kaia’s story very close to our hearts. We never posted about it on social media. Only our closest friends and family knew about her CHD and knew about her heart surgery. We were scared and didn’t know what was going to happen and didn’t have the capacity to share her story.

I thought it was going to take me a lot longer post-surgery to trust that Kaia was okay and be able to share her story, but in January I was ready. And I asked my husband if he was ready and said what if we use our story to give back? What if we celebrate by paying it forward? And that was it. Kaia KindHearts was born. It came together very quickly – in a matter of weeks. My husband and I owned a baby food business, Smushed Organics, several years ago that we had to shut down once Kaia was born to handle her health complications. I think that experience allowed us to put it together pretty quickly – you get very good at figuring stuff out you don’t know.

HG: What organization do you fundraise for? How did you choose where to donate?

LC: For this February fundraiser we have a money donation link for the Children’s Heart Foundation and then we are selling sweatshirts with proceeds going to the Heart Center Research Fund at Boston Children’s Hospital. Honestly, figuring out where the money would go was the most time-consuming part. I originally wanted to give money directly to families traveling for heart surgeries but after doing some research and talking to a few people in the nonprofit area I realized that would be a little trickier than I could handle right now, but it’s definitely something I’m hoping to do in the future. So we chose the Children’s Heart Foundation because they do amazing work and the Heart Center Research Fund at Boston Children’s since that was where Kaia’s surgery was.

HG: We absolutely love the design of the sweatshirts. Where did that idea first come from? Did you always know you wanted to partner with a local business?

kaias kindhearts chd fundraiser

(Photo Credit: Leigh Cole)

LC: This part happened SO quickly I knew it was meant to be! I saw a sweatshirt on Primary that I liked a lot and wanted to recreate, but I had no idea how. I posted on Hoboken Mommies FB page because the people on that page literally know everything. In true Hoboken Mommies form, 3 minutes later I had my answer – Katie Tucker from Rooted Rags commented and sent the image of that heart she had designed. We messaged back and forth, met the next day where she had developed a sample (turns out she lives a few blocks from me), and the next day the link was up and ready on her website. She truly has been so easy to work with and is an amazing person. Working with a local business has made this experience and this fundraiser that much more magical. My hope is that I can develop other pieces with other local businesses to benefit CHD because it’s been such a rewarding experience.

HG: What does CHD awareness month mean to you? How do you celebrate?

LC: Honestly, this is the first year I haven’t been just surviving to even realize there was a CHD awareness month. This time last year we were in the hospital so many times for pneumonia – we were just surviving. Now that we are through it, I can celebrate. I can give back. I can support those who are in it and just surviving. So creating Kaia’s KindHearts is how I celebrate!

HG: Where do you see Kaia’s KindHearts going in the future? Do you think you’ll host events?

LC: I originally thought Kaia’s KindHearts might just be an annual fundraiser, and I would have been SO happy with that. But this experience has been so incredible and surpassed my expectations that I think it’s here to stay. There’s so much more work and good we can do, and I’m here for it. I’d love to develop merchandise with other local vendors to benefit kids with CHD and do events at some point in the future as well.

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The thing probably nobody realizes is how you are impacted by all the other families you see at children’s hospitals. Yes, our time was hard while we were at the cardiac ICU in Boston, but I also remember the baby down the hall who had balloons up because he has been there long enough to celebrate his first birthday. I remember the tiredness and the love I saw in this one mom’s eyes who was walking her baby around the ICU in her stroller while pushing a poll with all the medicines the baby needed. This was probably a very big milestone, and I’m guessing came after months of work.

I remember the dad we talked to in the elevator who noticed we’d moved off the ICU while he still got off the elevator on the ICU floor and said they had months to go. I remember Anastasia – the baby across from Kaia in the NICU when she was born. She was there when we got there and was there when we left. They didn’t know what was wrong with her or how to fix it. I still think about Anastasia. So as much as our own story drives me, all these other stories drive me too. Our eyes have been opened to what families go through. We’ve actually been very lucky. So if our story can help others then I will do what I can.

kaia chd hoboken

(Photo Credit: Leigh Cole)

HG: What does Kaia think about the fundraiser? Did she love the sweatshirts?

LC: I’m not sure Kaia really understands the fundraiser, but she knows something special is happening and she knows people in town are wearing “her sweatshirt” and she loves that. And she knows that her heart is underneath the heart in the sweatshirt which is very special. She doesn’t know that’s different from other people yet but she knows that’s where her heart is.

HG: Now, for some local fun:

  • Yours + Kaia’s favorite local Hoboken business: She loves pizza from Hot House and hot chocolate from Café Sophia. Again it’s all about the food for that girl
  • Yours + Kaia’s favorite thing to do around town: She loves going to the Hoboken Public Library and of course all the wonderful playgrounds in town and the waterfront.

To donate to Kaia’s KindHearts or purchase a Rooted Rags sweatshirt, click here.

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