Know yourself and trust your gut feeling completely/and your moms! — You are the only person who knows yourself the best and many times you know something is wrong even when the doctors and tests do not show anything. My mom knew that something was wrong with my gallbladder for two years or tests and doctors saying everything was normal. My medication could cause issues and sure enough that is what it was. Felt relief after two years of not being able to eat anything and pain in my side and back.
In this interview series, we are exploring the subject of resilience among successful business leaders. Resilience is one characteristic that many successful leaders share in common, and in many cases it is the most important trait necessary to survive and thrive in today’s complex market. I had the pleasure of interviewing Jessica Cowin.
Jessica Cowin is a volunteer for the American Heart Association‘s Go Red For Women “Real Women” campaign. Jessica has faced health issues since she was 2 days old — when she was diagnosed with hypoplastic left heart syndrome, a rare birth defect in which the left side of the heart doesn’t develop. That led to heart and kidney transplants. Now, the 37-year-old Chicago resident is increasing awareness of congenital heart conditions and raising money for medical research.
Thank you so much for joining us! Our readers would love to get to know you a bit better. Can you tell us a bit about your backstory?
I was born with a rare congenital heart defect — Hypoplastic Left Heart Syndrome (HLHS), Double outlet, right ventricle (DORV). That fancy title means that I was born without the left side of my heart. The right side of my heart developed, but I had no left side.
My mom had a normal pregnancy so my defect was not seen on any sonograms. After I was born a nurse noticed I was in distress and that is when they found out about my heart. There is only palliative care with HLHS, which means that there is no cure, only surgical repairs to help the heart maintain function. I had this intervention, which was a three stage series of surgeries — 4 days old, 18 months, 5 years. My heart needed a subsequent repair when I was 13, which was called a revised Fontan with pacemaker. My heart was already beginning to fail at that point and I was listed for a heart transplant a few months after I turned 16.
I have always been a very social person, love being around my friends, loved being in school. I missed a lot of school due to doctors’ appointments, surgeries, being sick. That was really hard for me. When I was 16, I was struggling to stay alive, and felt surrounded by this cloudiness. It really kept me from focusing on anything other than surviving. It’s such a weird, indescribable, feeling. A transplant is really the only true repair of HLHS. A transplant gives you a full, functioning, heart with both the right and left sides. Yes, you get a whole, healthy heart (I do get that question every so often). It replaced a failing half a heart. The cloudiness left me along with the inability to walk ten feet and be out of breath. It is an incredible feeling, taking a true and real deep breath. You don’t realize how sick you are when you are living it. Only after do you realize what a normal heart feels like. With the good of a transplant comes those complications too, nothing is perfectly fixed. 10 years after my heart transplant, I went into kidney failure and was listed for a kidney transplant. My younger sister saved my life by donating one of her kidneys to me. That was the scariest time in my life, ironically, knowing she was in surgery and just wanting to know that she was ok. I was just about to turn 25, she was 22. I am 21 years post heart transplant and 11 years post kidney.
We take for granted the “normal” parts of our lives. My “normal” included growing up going to the cardiologist, like all congenital heart defect (CHD) patients do, no matter how much we wish we didn’t have to be different from our peers growing up. I always wanted to play sports, but I couldn’t because after running five steps, I would get so tired, out of breath, my chest would be pounding in pain from the tiny bit of exertion. For me, I think this was the hardest part, not being able to be involved with things the way I wanted to, but at the same time, I did not know any differently, how that really felt. But from growing up “differently”, it made me really appreciate those little things in life and the ability to share my story. One of my proudest moments was when my memoir, The Hearts of a Girl, was accepted for publishing.
Can you share with us the most interesting story from your career? Can you tell us what lessons or ‘take aways’ you learned from that?
I don’t have a specific story, but in my job I talk to doctors who are the researchers doing the work in the congenital heart defect world. If it wasn’t for their research, I would not be here. Other patients would not be here. The researchers and their research is so important and continuing to fund their technology, surgical improvements, long term outcome care/support, devices, is the most important lesson and take away. Without that research I would not have survived.
What do you think makes your company stand out? Can you share a story?
What makes The Children’s Heart Foundation stand out is our mission — To advance the diagnosis, treatment, and prevention of congenital heart defects by funding the most promising research. The Children’s Heart Foundation is our story, we raise money to fund research. Our volunteers, the families, the patients living with a CHD are the story. Perhaps something special that we have been able to do is connect our families with the researchers doing the work and research itself. Our families/volunteers were able to personally ask questions to some of the researchers we have funded, and actually talk to them face to face (zoom). It was inspiring to watch and gives so much hope and excitement.
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are? Can you share a story?
Honestly, it has been my mom and sister. Without their support I would not have written a book or pursed further education. They push me (in a good way) to go for the things I want to accomplish, even though there is uncertainty in the outcome. They have been by my side at every doctor’s appointment — good, bad, or ugly. Having a support system makes all the difference in the world. They will never let me give up on my list of life accomplishments and will support me on tough decisions, although their opinions weigh heavily on how I approach those decisions.
Ok thank you for all that. Now let’s shift to the main focus of this interview. We would like to explore and flesh out the trait of resilience. How would you define resilience? What do you believe are the characteristics or traits of resilient people?
My definition of resilience is the ability to getting through/overcome the touch moments, days, hours of those really dark times.
- Having support of family/friends
- The mentality to just keep going, the confidence to do what you need to do
- Keep moving forward
- Ability to talk about your experience in the hope it can help someone else
- Stubborn (just a little)
When you think of resilience, which person comes to mind? Can you explain why you chose that person?
I have had a role model in my mom of exactly that. She never gave up fighting for me and my health needs. If she needed something to happen, she figured out a way to make it happen, she is the most persistent person I know.
Has there ever been a time that someone told you something was impossible, but you did it anyway? Can you share the story with us?
When I was a kid, I definitely pushed my limits even though my mom or doctor told me to be careful. I had to try it for myself. I was stubborn and persistent and so much of my life was based on restrictions so to speak that I had to learn the hard way. I think so many things are told to be impossible when you are born with a CHD. It is hard for me to think of anything “normal” to explain.
Did you have a time in your life where you had one of your greatest setbacks, but you bounced back from it stronger than ever? Can you share that story with us?
That is a tough question. I think one of the greatest setbacks was being told I needed a kidney transplant. The idea of needing another transplant was tough. I needed to go for many pre/post treatments to make sure I would not reject my kidney, even though my sister was a near perfect match. I needed dialysis which was a horribly difficult for me. I did not have adequate insurance coverage and my mom was working on getting that, the hospital denied the surgery twice because we did not have the financial means to pay out of pocket. My sister started an online fundraiser and up until that point, I had never really talked about my heart condition. Because we were raising money, we had opportunities through media to share my story. That was the first time I really opened up about my heart condition and the need for a kidney. After the kidney transplant, I got more comfortable sharing my story openly and it really helped me decide to quit my job and write my memoir.
Did you have any experiences growing up that have contributed to building your resiliency? Can you share a story?
I always knew about the American Heart Association and always wanted to be a part of it. I never really knew if that was ever a possibility because the AHA focused on heart attacks and strokes and I had a CHD. I never knew how that could work out. When I heard of this opportunity, I was so excited, I cannot even express it. Something that I never thought was possible, became possible when the AHA introduced the CHD class being added to the Real Women 2021 Campaign. All I have ever wanted to do was share my story, be an advocate for other patients and families going through similar experiences and be involved with The Children’s Heart Foundation on a daily basis. I have been so excited to be a part of the inaugural year for women with CHDs.
Resilience is like a muscle that can be strengthened. In your opinion, what are 5 steps that someone can take to become more resilient? Please share a story or an example for each.
- Know yourself and trust your gut feeling completely/and your moms! — You are the only person who knows yourself the best and many times you know something is wrong even when the doctors and tests do not show anything. My mom knew that something was wrong with my gallbladder for two years or tests and doctors saying everything was normal. My medication could cause issues and sure enough that is what it was. Felt relief after two years of not being able to eat anything and pain in my side and back.
- Be persistent. Nothing will get done if you don’t keep following up. This is healthcare.
- Be stubborn and don’t give up!
- Have hope that things will get better.
- Share your story if it means it can help at least one person.
You are a person of great influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂
I would make sure that everyone knew about congenital heart disease the same way we all know about cancer. CHDs are the #1 birth defect and yet barely anyone knows about it, cancer even falls after CHDs, but everyone knows about how to fund cancer research and what a diagnosis like that means. There are no true cures for CHDs. Surgical repairs can be done to maintain certain conditions for a lifetime, but no cure. I wish I could do this in all reality. That is why I advocate so hard for The Children’s Heart Foundation, the research we fund and the future research to be funded and get so excited about being involved with campaigns like Go Red for Women. I just want to make that kind of difference. Hopefully, one day someone like Oprah will see my story and more research than I have ever imagined can be funded! #crazylifegoals
We are blessed that some very prominent leaders read this column. Is there a person in the world, or in the US with whom you would love to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them 🙂
Does it matter if they are living or not? I would love to have breakfast with Vivien Thomas and say thank you. Thank you for what you did for my future and the futures of millions of CHD patients. He was the true pioneer of the surgical technique that saved “blue babies” which is a known CHD, Tetralogy of Fallot and surgical techniques for improving circulation (transposition of the great arteries). If it were not for him, these techniques could have taken an even longer time to develop. Absolutely brilliant.
How can our readers follow you on social media?
Instagram — jcarmelc17
Facebook — Jessica Carmel (Cowin)
This was very inspiring. Thank you so much for joining us!