PCHA: At the Heart with Melanie

PCHA was founded by everyday people, joining forces for change.Together, we make a greater impact on the CHD Community. During heart month, we’re highlighting our staff members to share how PCHA has impacted their CHD journey and what they think makes us special. Today, we’re getting personal with Melanie Toth, our State Chapter Coordinator.

 
What do you love most about working for PCHA?
What I love most about working for PCHA is that everyone really works as a team! Even when we have different ideas, thoughts, or opinions, we always work together to do what’s best for patients, families, and the organization.
What do you think makes PCHA different from other CHD organizations?
PCHA consistently grows with the needs of the heart community. Our entire board, staff, and volunteer base is run by a collective community of heart parents, heart patients, bereaved families, and medical providers with one goal, to help Conquer CHD!
How does your experience with CHD help you relate to the families PCHA serves?
My experience with CHD helps me relate to the heart families in that they know the information and support I share comes from the heart. One quote I love:
“People don’t care how much you know until they know how much you care.” -Theodore Roosevelt.
I try my very best to show heart families how much I truly care by providing knowledge and support, because I wish I had more of both when we were first diagnosed.
How much about CHD did you know before you had Luke?
Before Luke was born and diagnosed with CHD, I knew nothing about it. I didn’t know it was the most common birth defect or that it affected 1 in 100 newborns. One of the things I love most about PCHA is that I am constantly gaining knowledge from CHD families and medical providers.
You’re passionate about supporting patients and families and meeting them where they are at, why is this so important?

It’s so important to me to support all heart families and meet them where they are in their journey, because this heart journey is always changing. I feel passionately that every heart family, no matter where they come from, should have a voice and know their journey can make a difference.
As PCHA’s State Chapter Coordinator, how does the state chapter structure help support families?

Our PCHA State Chapters  offer so much! In addition to the support and care package programs in our local communities, we empower the heart community with knowledge, through the resources and tools we provide. We give them a voice to advocate and share their stories, and we give them hope.

If you could be any animal in the world, what animal would you be and why?
If I could be any animal, I’d want to be a seahorse! The ocean and water have always been my favorite place for relaxation. Seahorses are so beautiful and unique. (I really wanted to say a mermaid but apparently they aren’t real)

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Somewhere to Turn

For the last week of February, we will hear from Rita Higgins, a heart mom, who shares her story and recognizes the role that the PCHA plays in a heart family’s life.

It was the first time that I saw my husband really cry. I can still hear his voice crackle with joy and love. I can still smell her hair as I held her in my arms for the first time and see her delicate brown skin and marble black eyes. The day that Trinity was born, I envisioned the perfectly laid out plan of her going from baby, to toddler, to child, to adolescent, to young woman. I had done everything the books told me to, and in return for staying away from alcohol, eating my vegetables, taking my prenatal vitamins, and exercising, I expected a healthy baby, that I would take to a primary care doctor for well child checkups and maybe the occasional ear infection.

“She seems so skinny, and she breathes really fast.” Those words will forever echo in my head. They were the first words I used to try and describe my feelings of unease about Trinity. She was only a week old, but my gut told me something wasn’t right. It told me that she wasn’t supposed to look like she was running a marathon when I tried to breast feed her, that she should have more “baby fat,” and that even though I knew babies slept a lot, she seemed to sleep excessively.

“First-time mothers worry a lot. Are you sure you are feeding her appropriately?” Those words will also forever echo in my head. They were the first words used to brush off my concerns. They were the first words uttered towards me by a health care professional that would make me question if what I felt and what I saw was real or not. “Maybe I am just a worried mom who doesn’t know anything about babies,” I thought to myself. “What do I know? They went to medical school and are smarter than me. I should have never said anything.” I started to wonder if maybe I hadn’t listened enough to the lactation consultant. Maybe I wasn’t breastfeeding her right, maybe something was wrong with my milk, and she wasn’t getting enough, maybe I should just put her on formula, maybe I’m not cut out for this…

A couple weeks later I returned to the doctor’s office for a routine checkup. “I hear a heart murmur, and you need to go see a cardiologist at Children’s Hospital of Wisconsin,” she said to me with a look that I didn’t recognize. Confusion, anger, and fear rushed through my body. I wanted to scream, and cry, and storm out while giving the doctor a piece of my mind. It was Trinity’s two-month checkup, and the day was supposed to consist of me taking Trinity to the doctor, holding her for an immunization or two, and going home to enjoy my last couple of days of maternity leave. Instead I couldn’t even figure out how I was going to drive home without breaking down. I was by myself, because after all, it was supposed to be a routine appointment. I drove home with so much guilt and shame that day. I looked my baby in the eyes and apologized to her for not pressing the doctor when my concerns were not taken seriously, for not fighting for her and taking her to a different doctor, and for doubting myself and my ability to know that something was wrong all along.

“She has what we call ventricular septal defects, or VSDs. Hers is on the severe side because there are a lot of holes. Think of a piece of swiss cheese. That’s why sometimes we call what she has ‘swiss cheese’ VSDs. We will start her on some medicine, but she will need surgery at some point to fix it.” These were the words that I heard at the Herma Heart Institute. Television static is the only way I can describe what engulfed me at that moment. I couldn’t think, I couldn’t hear, I couldn’t move. I even wondered if I was in one of those real-life type of dreams that I had sometimes, and I just needed to channel myself to a different dream. This couldn’t be real. I had done everything right, I had been told not to worry, and yet here I was listening to the most searing words that I had ever heard. Up until that point in my life, the only night I had ever stayed in a hospital was for child birth. I had never heard of Children’s Hospital of Wisconsin. I didn’t even know that there were hospitals specifically for children. The only heart disease I had ever heard of was the type that older people get and is associated with heart attacks or strokes. I had never heard the term “congenital heart defect.” I didn’t even know what “congenital” meant. I felt lost and alone, and unsure of who I could trust. I had already failed her once, and I was terrified of failing her again. My job was to protect her and make decisions that were in her best interest. How could I do that when I didn’t even know where to start?

Back in 2002, there wasn’t a PCHA to help me navigate the uncertain waters. Trinity would eventually go on to have her first surgery in April of 2002, and her second in June of 2007. She suffered severe complications after her second surgery and ended up on ECMO (extracorporeal membrane oxygenation). The complications also damaged her mitral valve. Although she wasn’t born with a mitral valve issue, the damage was so severe that she had to have a third surgery in March of 2008 to attempt repair it. Looking back, I was so lucky that I lived in the same city that a top-ranked pediatric heart program is located. I had no idea that where she had surgery could affect her for the rest of her life. I didn’t know what questions to ask, what information I should be seeking out to compare, what pitfalls to avoid, or what proactive actions I should take. It’s scary to think of what was at stake, and worse yet, that I didn’t even know it at the time.

PCHA is an answer to so many things I wished I had back then. They provide somewhere to turn to get trusted facts, a guide to help understand what you may not know and what questions you should be asking, and support in the way of connecting you with people who have been on the journey. They have fought for transparency so that parents can understand the quality of surgical programs to make informed decisions on where their child should be treated. They have been a strong voice in moving legislation that helps fund research that benefits children with CHD from birth to adulthood. They even help spread awareness among health care professionals to ensure that patients are receiving care based on best practices. As I reflect on the loneliness I felt, the fog of confusion, and the things that were left to chance because I didn’t know any better at the time, I am so grateful that PCHA is here so that parents no longer must navigate those waters alone. 

Trinity is 17 now, and we look forward to using the guide that PCHA is developing to help teenagers transition into the adult CHD world (editor’s note: this resource is still in development). This is another area that PCHA is making an impact. As kids like Trinity grow up, it gives me comfort to know that PCHA is there to help her make decisions as an adult, to continue to help health care providers understand the needs of adult patients with CHD, and to continue to champion legislation that will protect her ability to receive quality care.

PCHA stands for Pediatric Congenital Heart Association, but for me, it also stands for People Championing Hope Always. Hope is a feeling of expectation and desire for something positive to happen; a feeling of trust. This is what knowing that PCHA is on our side gives to me, and to Trinity. It’s sometimes difficult for a parent to let go and allow their children to begin making their own decisions. For a parent of a child with a lifelong health issue, it can be that much more difficult. Thanks to PCHA, it’s not as scary as I used to imagine it would be.

 

Rita is heart mom, and mother of two girls. Her oldest daughter was born with CHD. She has a passion for bringing in the voice of the patient and family to healthcare, and has a high interest in health literacy. She currently serves on the Health Literacy Task Force at Children’s Hospital of Wisconsin. Rita had a career in business before deciding to return to school for nursing. She received her RN license in 2012, and worked for a pediatric hospital for 6 1/2 years. She currently works in clinical education for a medical device company. Outside of her professional life, Rita enjoys spending time with her husband and kids.  Favorite activities include biking, fishing, and watching her daughters’ sporting events, music performances, and drama productions. 

PCHA: At the Heart with Jess

PCHA was founded by everyday people, joining forces for change.Together, we make a greater impact on the CHD Community. During heart month, we’re highlighting our staff members to share how PCHA has impacted their CHD journey and what they think makes us special. Today, we’re getting personal with Jessica Chenevert, our Marketing Coordinator.

 

 

What do you love most about working for PCHA?
I love being a part of something that really makes a difference. I get to be a part of shaping the future landscape of CHD. I get to work with people that I admire and inspire me every day. Because of our shared experiences, our work culture isn’t like a typical 9-5 job. We’re a family.
What do you think makes PCHA different from other CHD organizations?
We are a one stop shop for all things CHD.
PCHA is the only CHD organization that provides invaluable resources, offers support to families throughout the lifespan, and advocates on a national level.

How does your experience with CHD help you relate to the families PCHA serves?
When I had my son Barrett, we didn’t know there was anything wrong with his heart. We felt so blindsided after a normal healthy pregnancy. It felt like I was thrown head first out of an airplane, spinning in a downward spiral, unable to catch my breath, and helpless to do anything but fall. I think that trauma is very real for so many CHD families out there, and the fact that PCHA is made up of families who have been where they are is crucial, in order for us to effectively fight for and support those families. We’ve slept in those hospital chairs, we’ve made those life or death decisions, we’ve struggled to pay the bills, we’ve lost our insurance coverage, we’ve celebrated every little victory, and we’ve been inspired by the families who came before us.
How did you discover and come to work for PCHA?
I found PCHA at my son’s bedside, while he was inpatient in 2014. Shortly there after, I saw they had a legislative conference in Washington D.C., where families are able to share their stories with congress. I initially disregarded it as something interesting but that I couldn’t do. Then, I saw it again, and again, until I said to my husband, “I think I want to do that, I think I can.” So I organized a T-shirt booster for “Team Barrett” shirts and raised enough money to pay my way to the 2015 conference. I got bit hard by the advocacy bug, fell in love with PCHA, and emailed Amy the following week to see what  I could do to be more involved. I volunteered for the next 3 years and eventually officially made it on staff.
How has your involvement in PCHA impacted your perspective on your journey with CHD?

I am constantly learning new things all the time. The opportunity to be involved in national conversations with other parents, patients, providers, and government officials has opened my eyes to what it really means for patients and families to walk this road, and it allows me to better serve them. It’s also opened my eyes to what it means for my family, as we continue down this lifelong path, from the neurodevelopmental consequences my son faces and the tools he needs to be successful in every aspect of his life, to transition into an independent adult responsible for his own care. 
As PCHA’s Marketing Coordinator, you’re on the front lines interacting with families every day. What is your favorite tagline PCHA uses and what makes it so meaningful?

My absolute favorite tagline we use is “Together, we are Conquering CHD!” It speaks volumes to me because you can interpret it however it to applies to you.
I am Conquering CHD every day as a patient or parent of a child with complex medical needs.
My child is Conquering CHD by continuing to grow, learn, and survive.
Our family and friends are Conquering CHD through their endless love and support for us.
Too many of my friends are Conquering CHD by simply waking up every day without the children they lost to this disease and carrying on their legacy and living their life for those children.
The dedicated and passionate CHD providers are Conquering CHD through their love and commitment to their work and CHD families.
PCHA is Conquering CHD through education, support, research, and awareness.
Together, we are Conquering CHD!

If you won $20 million dollars in the lottery, what would you do with the money?
If I won the lottery I would be speechless for the first time in my entire life! Besides the practical stuff like paying off any debts and putting a portion into savings, I would do a couple of fun things! Firstly, I would donate to my favorite charity: PCHA! Second, I would donate to the Heart Clinic and the CVCC unit of Children’s Minnesota, where my son receives care. Then, I would love to take a vacation, travel around the globe with my husband and son, visiting as many places as we can. Nolan and I have both been to Australia (separately), we would love to go back together. I also want to visit Sweden, specifically the town where my great great great grandfather lived before journeying to America in 1885 to found Lutsen, Minnesota.

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PCHA: At the Heart with David

PCHA was founded by everyday people, joining forces for change.Together, we make a greater impact on the CHD Community. During heart month, we’re highlighting our staff members to share how PCHA has impacted their CHD journey and what they think makes us special. Today, we’re getting personal with David Kasnic, our Executive Director and Co-founder of PCHA.

 
What do you love most about working for PCHA?
Helping those people that are going through the same situations that we have been through. As patients, parents, and family members, we can share our own experiences and offer opportunities to educate, connect, and potentially advocate for those living with CHD. Also, the people I work with are the most passionate and dedicated people I have come across in my career. Our culture is amazing.
What do you think makes PCHA different from other CHD organizations?
As a grassroots organization, we have all experienced CHD in our personal lives. It’s not something we can go home and forget about for the night, we live it with our children, friends, family members and people we meet. We are doing this because we know we can make a positive impact on the lives of these CHD patients, parents and family members. It’s not just a job for us, it’s our reality. If we can’t show value or impact on a particular program, we won’t do it.
How does your experience with CHD help you relate to the families PCHA serves?
As stated above, it’s something we live with and have gone through. It gives us “membership” into a tribe of people that realize we understand and have gone from the dark places of CHD to hope and positivity. Telling someone you understand what they have gone through is one thing (i.e. empathy), but actually experiencing it for yourself is another. None of us chose CHD, but we are bound and determined to fight this disease for the sake of our children, friends, and family.
Five years ago, you saw a gap in advocacy for CHD and had an idea, and along with Amy, started PCHA. How does it feel to see how far that idea has come?
It’s pretty amazing to see the organization grow but, more importantly, to see how many others have joined us because they saw there was so much more to do too. We didn’t realize that we would need to grow into education and support as well. Our motto is that if there is a need, and no one is filling that need, we will look at filling it and executing it quickly. There are 40,000 new patients born into this world every year. We cannot wait to get these programs out there, so others can benefit from our experience and knowledge.
How do your experiences as a heart dad drive your decision making as an executive director of a CHD organization?

First of all, it’s not just about my child. If I only made decisions related to my daughter, I wouldn’t be doing this for the right reason. It’s about all those people out there living with CHD or those who are about to face CHD. Second, I feel like PCHA is a place where I can bring my passion for CHD (because of my daughter) and my business experience together for a very powerful organization that fights for everyone with CHD. All the people we have involved have a true passion for CHD and a need to give back.
How do you hope PCHA will impact Piper’s future? Do you hope to empower her to advocate for herself with regard to her care?
My hope is that Piper, or any other person living with CHD, can find the resources she needs in PCHA.  There is no cure for CHD, so it’s something she is going to live with the rest of her life. My job as a parent is to teach her to advocate for her health and to stay in care, with a qualified, congenital cardiologist. PCHA should be a place she turns to when looking for information about work place issues, pregnancy issues, insurance issues, etc.

What is your favorite genre of music and why?
My favorite is Metal. My favorite band is Metallica. It started when I was a kid, with buying my first Kiss album. I was around 9. I just love the driving beat and powerful music behind it.

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PCHA: At the Heart with Amy

PCHA was founded by everyday people, joining forces for change.Together, we make a greater impact on the CHD Community. During heart month, we’re highlighting our staff members to share how PCHA has impacted their CHD journey and what they think makes us special. Today, we’re getting personal with Amy Basken, our Director of Programs and Co-founder of PCHA.

 
What do you love most about working for PCHA?
That it is never “a job.” I feel like everything I do has meaning, and the people I work with help contribute to that meaning.
What do you think makes PCHA different from other CHD organizations?
PCHA has a unique culture that is evident in everything it does. I think it can be summed up with the word “Empowering.” Not only does PCHA develop tangible tools and resources but it also generates a palpable positive energy that inspires and motivates.
How does your experience with CHD help you relate to the families PCHA serves?
Sometimes I feel really guilty that my son is doing so well. But, having experienced time in the hospital with him, I vividly remember the families who had been there for months, and those that left the hospital without their child. While I’m no longer in the day-to-day throes of CHD, I try to tap into that empathy to keep me going. I try hard to stay connected with people in all stages of the journey so I can continue to learn about how the CHD community is constantly evolving. I’m always learning!
With so much to be done in the CHD world, how do you prioritize where to start?
At PCHA, we spend a lot of time listening. Listening to families and what their needs are, and to medical experts as to how we can take those needs and make a difference. We look at the whole landscape and see who else might be already working to address a need, and where we might provide the best impact. Still, there is always the struggle of wanting to do more. Every time you successfully open a door, you see so many new doors to open!
If it wasn’t for your journey and role at PCHA, could you see yourself as a nationally recognized speaker, national public policy contributor, and advocacy superstar?
No! I’m just a mom from a small town in Wisconsin. Although, I do like to talk a lot. It is a real privilege to celebrate the work of PCHA as others see our real value, giving us opportunities to have a seat at the table, or time at the podium, to reflect and represent the patients and parents that are the life-blood of PCHA, and deserve to be at the center of these game changing conversations.
You and PCHA were instrumental in the passage of the Congenital Heart Futures Reauthorization Act that awards $50 million dollars to CHD research over the next 5 years, how does it feel knowing you’ve helped change the landscape of CHD for patients and families for years to come?
This is certainly a collective win. Advocacy is all about building relationships and moving people to action. PCHA was founded on this principle and was an excellent vehicle to move this issue forward. I am so proud of all the people who worked together to share their story and inspire our federal policy makers to make game-changing decisions that will benefit the CHD community for generations.

What would people be surprised to know about you?
I loathe mayonnaise and mustard. All condiments, really. I’m more likely to starve than eat anything with obvious condiments.