Mental Health – Courtney’s Story – A Mom’s Perspective

As we continue discussing mental health this month, Courtney Kile shares with us how her experiences as Heart Mom to son Sully impacted her mental health. Please note that this was originally posted in the summer of 2017.

I still remember the first time it happened. The surgeon had come in to tell us that the open heart surgery performed on my 3-day old son, was an outstanding success.  I remember looking at the surgeon calmly and saying, “Thank you very much,” and I turned on my heel and nearly sprinted down the hallway.  My mom and step mom followed close behind, calling my name, but my brain wasn’t computing her words.  I grabbed the door to the lactation room at the end of the hall and swung it open to close myself inside.

Then I completely and totally lost it.

I sat on the sterile vinyl chair, hugging myself, sobbing, and I think I even drooled a little.  I’d been holding in all these emotions, trying to process everything that happened in the last 30 hours and once I knew he “safe”, I couldn’t hold back anymore.  Little did I know, this would be the start of a near constant internal battle.

My son Sully was born in November 2011, seemingly healthy.  Just 36 hours later, local doctors discovered a Congenital Heart Defect and he was airlifted to the larger, metro hospital.  The 3rd day of his life, a team of doctors and surgeons operated on his 6lb. 8 oz. body. After a spectacular recovery from his first surgery, we handed him off to the surgeons again just 6 months later.  That surgery was also a screaming success.

I considered myself a pretty together person.  I felt like I handled stress well and had healthy coping skills (scarfing a king size Reese’s is a healthy coping mechanism, right?).  As time went on, I noticed myself beginning to change.  When we were getting ready to leave the house for any reason, I would retch and gag, and sometimes even vomit.  I would get sweaty and nervous, and I had no idea what was going on.  If I wasn’t with Sully, I would think of all the horrible possibilities that could happen.  I would replay these scenarios in my head until I would end up in a crying ball on the couch.  What was wrong with me?  Everything was fine, but I just couldn’t figure out what was going on.  I was too scared to talk to anyone about it.  I have a job that keeps me in the public eye.  What if they thought I was crazy?  What would my family think?  I knew it wasn’t normal to need a gallon of Pepto just to go and get groceries.   I’d dealt with a mild form of anxiety all my life, but never like this.  This was different.

Right after Sully turned two, a friend a mine sat me down for a frank discussion.  Being a mental health practioner, she’d seen this before.  She told me that she wanted me to talk to my doctor.  I tried to blow her off, but she pushed further.  Then she said it, “I think you have PTSD.”

Umm… what?

I was stunned.  I wasn’t in the military and hadn’t been through a war.  How could I possibly have PTSD?  There had to be another explanation.

Even though I thought my friend was way off base, I decided to call my doctor.  After talking to my doctor and being referred to a therapist, it was confirmed; I had Post Traumatic Stress Disorder (PTSD). The diagnosis was hard to swallow.  I blamed myself for not being able to control my emotions and thoughts.  I felt crazy.

Then, I started talking to other parents who’d been through the same or similar situations.  It was during these conversations that I realized that I wasn’t alone.  All these other parents had feelings like I did.  Though none of us had been deployed to a warzone, we were on the frontlines of our own; battling for our children’s lives. We’d waged war against catastrophic medical conditions that threatened to kill our children; and sadly, some of those medical conditions took the lives of some sweet warriors.

With a newly restored hope, I decided to talk more about PTSD and mental health.  There is such a stigma surrounding mental health issues.  The world is judgmental, that’s a fact, but we cannot stand silent in battle alone.  We need to talk about it.  We need to let the masses know that this is a real struggle that stems from healing wounds.  Seeing your child hooked up to 20 IV racks, with chest tubes, and a ventilator, is not something you can easily get over.  When you face the mortality of your child, you change. It is something that rocks you to the very core of your being.

The biggest thing I’ve learned since my diagnosis is self-care.  I can’t be the mom Sully needs unless I take care of myself.  Admitting you need help can be tough for people, but it is a necessity.  You can’t do this alone. Do not be ashamed.  We are in this together.

 

I’m happy to report that Sully is almost 6 years old now.  He is starting kindergarten in the fall. He’s happy, healthy, and the joy of our lives.  As for me, I’ve learned tips and tricks to manage my anxiety and panic.  Don’t get me wrong, I’m not perfect.  There are still times that leave me in a nervous mess, reaching for my inhaler.  But those times are few and far between. Every day I choose to take care of myself and not let PTSD control me.

 

 

 

 

 

Courtney Kile hails from Duluth, MN.  She is the mom to an amazing CHD warrior named Sully and wife to Robert.  Courtney and her husband run Project Heart to Heart, a Minnesota based non-profit serving families who have children born with Congenital Heart Defects. She is a paralegal by trade and uses her skills to help CHD families.

Head and Heart with Dr. Creel

For the month of April, we are exploring mental health, and what mental health means for a CHD family.Today we’ll hear from Dr. Creel, a Certified Grief Recovery Specialist, as she shares her experience with CHD families.  

Fifteen years ago, when I first began my work in the field of working with heart patients, both young and old, I met with a family whose 7-year-old son and 12-year-old daughter both had to have pacemakers implanted. The diagnosis came fiercely and suddenly and the parents were understandably devastated, anxious and scared. I soon realized that as rapid as the diagnosis was given, there were major changes that the family were making, deciding to home school both children, selling their home and moving closer to the hospital, and mom deciding to quit her job were just a few. Not having much experience in this area I realized that this family’s world was turning upside down quickly, and it was quite obvious, to me anyway, that everyone in the family was feeling out of control, helpless and more importantly that mom and dad were trying to feel in as much control as they could by making personal choices and changes. Ironically both children were calm when they were not around their parents.

This was my first introduction to families dealing with heart conditions. As I realized then and I realize today day after day, after working with thousands of families, dealing with a medical diagnosis, whether it be preexisting, a new diagnosis, a fetal diagnosis, or a terminal diagnosis, the journey is a personal and very private one.

My role in working with families has been an incredible, fantastic, painful, exhilarating, enlightening and humbling experience, one I would not ever trade. Everyday I learn from my patients. I learn that it’s okay for my children and parents to be scared, that it’s ok for my children to not want to talk about it, that my parents need to talk about it, and that the fear of death and dying many times looms over head.

I have been lucky enough to see my heart children go through phases in their young lives, first seeing a child from the young age of 4 or 5 up to the wonderful young adult age of 18 and 19 and beyond. Within the past several years I have been privileged enough to be invited into the adult heart world and in the world of parents pregnant with a heart baby and I try and help all transition from one life to a completely different one.

Some of the issues I professionally experience are; Pre surgery concerns, fears of unknown, the number one question I get asked is about pain and scaring, I try and look to the family to see what kind of support there is, children that are sheltered or exposed and what a diagnosis looks like for these children .Post Surgery concerns. I look to see who will be available with recovery and will the child miss school, causing added stress. I also want the schools to have an understanding as to what is going on with the child. And ultimately I look at the communication pathway between child and parent.

There are certain age related pathologies I see with heart patients, From birth to 3 years I see parental concerns, adaptation into society concerns and concerns on the parents part of  the child’s future. From 4 to 7 years I see fear, anger, and feelings of being immortal. From 8 to 13 years I see anger, withdrawn behavior and confusion around having a heart condition. And from 14 to young adult I see sadness, fear, anxiety and worry.

With my heart transplant patients I see that most experience a state of confusion/auto pilot, along with the parents. Many times I see complete acceptance and a sense of appreciation with no pressure. With others I see a lack of acceptance, a sense of “living on borrowed time”.  I see unusual closeness and beautiful connections between mothers and sons and fathers and daughters. And many times I hear that there is a feeling of never feeling satisfied and always having to prove something, a pressure to perform for the donor family.

Many times I wish the family would be extra careful in what they say and when they speak about their child’s condition. Little ears can have big curious thoughts and those thoughts can be very scary when they are misunderstood or not explained.  The psychological perspective with illness and children is that children should be told about their illness on the level they can comprehend. Many parents know if their child worries or gets anxious and this needs to be taken into consideration when speaking to a child about their condition. Some parents forget that a child thinks in child thoughts and are not quite at the adult level of understanding as bright as child may seem. I also encourage my families to never use the word defect. I had an adult patient whose kindergarten teacher told him he had a heart defect and even as an adult he thought he was defected on some level. It was only after we spoke about the impact of this word that he understood that cars, planes, inanimate objects have defects, not people. The relief on his face was priceless.

I find many of my adult patients have hidden dark thoughts of fear of death. More than many of my adult patients and parents of heart kids have a looming feeling that
“the other shoe is about to drop”.  I hear “everything is going so well, it feels strange”. I find that there tends to be depression and anxiety, which many times are 2 sides to the same coin, which often occur within the same time frame, around the unknown and the fear of being out of control. And the desperate need to be in control of something, of anything because it soothes the anxious mind. One out of every 2 people who has had a heart attack experience symptoms suggestive of depressive disorder during or slightly after recovery. Many times the depression and anxiety tends to be contagious and parents and patients have to be aware of their fears and feelings when around others because of this contagious air.  Many times there is an indifference, a guarded or defensive sense with issues around trust and vulnerability. For my adult patients, they know that they look or feel different, that they are no longer “healthy” which causes low energy, low interest in things causing depression and anxiety.

I also find that being in a space of having a child with a heart condition or having a heart condition is a very lonely place. It is a country that unless personally visited, cannot be explained or created in the mind of the visitor.

I stress the importance of clarity through communication, how important it is to talk about fears, and confusion and anger, regardless of the age, or the relation to the patient. Many times the more we speak about something, the more we look at it from different angles, the less threatening it can become. (This is one reason therapy is so vital in some situations). I speak about post traumatic stress disorder and how triggers of fear, confusion and anger (i.e. going to the doctors office, hearing that someone died of a heart condition, your child having a cold and you think is so much more than a cold, siblings worrying about medical appointments), can put you ten steps behind, but the importance of being aware of these triggers and managing them is what counts. I stress the importance of self-respect and respecting all the feelings that come with having a heart condition and the importance of respecting an emotionally heavy heart.

I stress self-care and the incredible importance of taking time to take time. And knowing what feels good because my families and patients for sure, know what doesn’t.  I use my term “strength-o-meter”, in that you have to ask yourself how do I feel today, do I have the strength to accomplish things and to function for myself or my family, for my child or is it a day of relaxation and self care? I stress the importance of speaking with others who have, or will be experiencing, the same journey. No one likes to feel alone or isolated.

But ultimately, and one of the most important points to be understood by everyone I see, is the importance of the balance between illness and health. Balancing the good thoughts with the bad thoughts, the good times with the bad times and the fears of the unknown with clarity and control, this is the key in managing life in and of itself. Acknowledging that one can be  off centered but find their very own balance that works so life can be fulfilled, enjoyed and a life worthwhile living is what I always want my patient, young or old, to hold onto.

 

Beth Creel holds her PhD in Clinical Psychology and is a Certified Grief Counselor.  She has been with the Childrens Heart Center for 15 years where she works with individuals dealing with cardiac issues.  She works with parents who are pregnant and are dealing with an unborn child with a heart or other medically compromised condition, children with preexisting cardiac conditions, newly diagnosed heart patients, emotional issues around upcoming cardiac procedures and death and dying concerns. Dr. Creel also works with adults and children dealing with cystic fibrosis and addresses the complications this illness poses on all levels. In addition Dr. Creel also counsels families dealing with gastrointestinal conditions such as Crohn’s disease, Ulcerative colitis and Celiac disease. Dr. Creel received her combined Master’s degree and PhD in Clinical Psychology at the California Graduate Institute in Westwood, California and received her BA at California State University Northridge. Her background has always been advocacy and education of individuals and families struggling with medical and mental health issues.  Dr. Creels approach in working with families is to identify what the family/patient understands about the medical issue, setting realistic goals for coping and then identify post-traumatic triggers and how to effectively deal with this state of mind. Dr. Creel also has a private practice, The Grief and Recovery Institute where she concentrates solely on grief and loss.

 

 

 

 

“Taboo” ACHD Activities

**Disclaimer: ADULT CONTENT** Today’s post is on a subject that people with CHD don’t always discuss, but it is a very important topic nonetheless: sex. Below is one woman’s account of what it’s like to be with her husband and have CHD. Due to the sensitive nature of this topic our blogger has asked to remain anonymous. *Patients should discuss the risks of sexual activity with their doctor.*

Shedding a light into a CHD patients sex life is something people just don’t talk about. And I get it. Sex is the most personal and intimate form of physical connection someone can have with another human being. The topic also gets the back seat because as a CHD patient, we deal with life and death situations. Sex becomes an afterthought.

When it comes to sex, there are two questions I always ponder with: one, am I beautiful enough to have sex and two, will I be able to physically endure sex.

As a woman, we are constantly told by the media of what a perfect body looks like. You will be hard pressed to find anyone representing scars in a Victoria Secret advertisement, new bathing suit line or in a movie. With these constant images of what a perfect body should be, it makes it that much harder to be physically vulnerable with someone. It took me a long time to feel comfortable with my body and that only truly happened when I married my husband. My husband validates that my body is beautiful. I have never felt insecure in our sex life because of him. He makes me feel confident in every aspect.

My CHD health has been changing and with that, my sex life has changed as well…not drastically but it has changed. I am not always able to physically endure sex. There will be times I have to pause or stop to catch my breath. It is frustrating to say the least, especially when you are finding your groove. I am so thankful that my husband never pressures me to keep going. He listens and trusts me when I need a break. Once a skipped beat has passed or I am no longer short of breath, we pick up where we left off.  

I truly believe that my husband and I have a beautiful sex life because he allows me to be vulnerable without judgement. He validates my beauty and trusts me when I need a break. Sex doesn’t have to be a scary thing or off the table for patients with CHD. It is all about finding the right person to share that life with. Someone who understands, embraces your scars and follows your lead.

CHD and the Taboo Q&A: Your Questions Answered

 

Today we revisit a couple of Q&A videos that were originally posted in October of 2017. The first video is an interview with Dr. Madsen, on alcohol and drugs. And the second video is an interview with Dr. Gurvitz on college, tattoos, and contraception. 

Dr. Nicolas Madsen – Activity, Drugs & Alcohol, Related Conditions, Staying in Care

Nicolas L. Madsen, MD, MPH joined the Heart Institute at Cincinnati Children’s Hospital Medical Center in July 2012. He is the Vice Chair of PCHA’s Medical Advisory Board.

 

 

 

 

Dr. Michelle Gurvitz –  College, Tattoos, Contraception, and Transition.

Dr. Gurvitz is an assistant professor of pediatrics at Harvard Medical School and a staff cardiologist with the Boston Adult Congenital Heart program at Children’s Hospital Boston and Brigham and Women’s Hospital.

 

 

 

 

 

Thank you, Dr. Madsen, and Dr. Gurvitz, for your willingness to share your knowledge and experience!

 

Taking Back Some Control

For the month of March we will be discussing the various “taboo” subjects that come up in thinking about life with CHD. This week we will hear from Jennifer, a CHD warrior, who talks about how she took back some control by choosing some of her scars.

I was trying on dresses for my best friends rehearsal dinner. My mom, sister, and I had gone shopping together. I had come out of the fitting room to get my zipper zipped, without realizing my new tattoo was visible – the dress gaping open in back. My mom hadn’t seen it yet.

When my mom noticed the tattoo she wasn’t mad per se, but her disapproval was apparent. I was, however, 30 years old and had the right to make decisions about my own body.  And of course, this wasn’t the first time we found ourselves in this situation.

Growing up my parents were not big fans of body piercings or tattoos. While my best friend, and pretty much every girl in my class, had her ears pierced basically since birth, my mom made me wait. In fairness, I only had to wait to get mine done until after my 1st communion in second grade, but at the time it seemed like FOREVER, since all my friends had it done already.

When I got to high school, I wanted a second hole in my lobes. I knew my mom would never let me, so I convinced my aunt to take me instead.

Senior year, like many teenagers, I decided I wanted to get something – ANYTHING – else pierced the day I turned 18. It was a rite of passage, after all. But I would be having surgery number 2 just a few months prior, and my mom didn’t think it would be a good idea. To be honest, this was the first time it even crossed my mind that there could be link between piercings and heart health. I thought my mom was just being over protective.

So being a stubborn teenager, I wasn’t going to take no for an answer. Days after surgery, on rounds, I asked the surgeon if I could get my cartilage pierced. I felt vindicated when he gave me a very cautious green-light. So the day I turned 18, I walked myself to the Claire’s near school and put another stud in my ear!  And my mom took it like many parents do, looking on a little unhappy, a little disappointed, but accepting that as I grow up, somethings are out of her hands.

Over the years, I got a second cartilage piercing and pierced my nose. Twice. No, I didn’t have two nose piercings at once, but I was so afraid of my parents seeing it the first time around, I took it out, only to do it all over again a few months later!

Once I’d had enough piercings, I moved onto tattoos.

A couple years after graduating college, my friends and I decided to get tattoos together.  I got a tiny heart on my left foot, with a tiny crooked halo and a three-feathered wing off one side. I got it to remind me of my grandfather, to remind myself he was always with me.

At the end of 2011, I set out to do 30 before 30 –  a list of 30 things to do before I turned 30. The list included tasks like “do an anonymous good deed” or “go for a hike at sunrise”. I also included “get tattoo #2” (I did at least think ahead to pre-medicate). I wanted something that symbolized my hope for my life.  And since I love words, I went with a quote. It reads, “Go confidently in the direction of your dreams. Live the life you’ve imagined.” 

I had spent a good portion of my life being afraid to live it, so while reaching that milestone, 30 years old, I wanted to celebrate, to push myself out of my comfort zone, with a reminder that I had the strength to make my life what I wanted it to be.  That’s what the whole list was about anyway, and the tattoo would be permanent  proof of the accomplishment.

So as my mom zipped my dress and I assessed myself in the mirror, she asked me, “Why do you want to do that to your body anyway?”

I said, “I have so many scars already, might as well have a few I choose.”  And I gave her reflection in the mirror a goofy grin.

My tattoos and piercings have meant different things to me as I’ve aged. First, it was the rush of excitement in the rebellion, in the wildness of it.  It felt like self expression, like coming of age, and, most importantly, it feels like taking control of my body.  And I can’t wait to add more!

*NOTE – Be sure to check in with your cardiac care team prior to piercings or tattoos. While you may or may not have restrictions regarding these, your team may recommend certain precautions like pre-medication. 

 

  Jennifer Weiner was diagnosed with Truncus Arteriosus after birth in 1982. She has had two open heart repair surgeries, at 18 months old and 17 years. After complications arose and various anomalies were uncovered in early adulthood, Jennifer had a stent placed in her LPA, received an ICD, and will be having her 3rd open heart surgery later this month. Now 37, she is a graduate of DePaul University, with a degree in Elementary Education and an MA in English and Creative Writing, from SNHU. Jennifer currently volunteers for the Pediatric Congenital Heart Association, both nationally and locally, as the ACHD Lead and on the Illinois Chapter Board. She also serves on the steering committee of Chicagoland Cardiac Connections, an organization that provides support and resources for patients with cardiac devices, based out of Lurie Children’s Chicago.

 

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)

via GIPHY

 

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.