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.

 

 

 

School Intervention Series: Making A Difference

In the last week in our series on how CHD affects us at school and work, we hear from Kyle Herma, a School Intervention Specialist at Children’s Hospital of Wisconsin. Although this blog was originally posted in the summer of 2017, these tips, tricks, and recommendations for navigating a school’s system as a person who is affected by CHD, is still applicable today. 

 

Twenty nine years ago my sister was born with Hypoplastic Left Heart Syndrome (HLHS), a congenital heart defect that left a chamber of her heart severely underdeveloped at birth. This was at a time when medical technology and surgical repairs options were very limited for a complex baby like my sister. While she ended up losing her battle with HLHS, her short time on Earth ultimately began a battle much greater – the fight to eradicate congenital heart defects completely and in the process, improve medical outcomes and quality of life for those currently affected. Today, the Herma Heart Center (HHC) at Children’s Hospital of Wisconsin is known for having the best published survival rates of HLHS in the world. However, a top recognition like this is not achieved without constant work towards excellence and innovation in all areas of care.

 

Herma Heart Center

How does this relate to PCHA’s “Back-to-School” theme this month? It does on so many levels! Two years ago I was a kindergarten teacher, loving every minute of every day guiding 4 and 5-year-old kids as they discovered their world. I worked in the inner city of Milwaukee at a low-income Charter School – all of my students considered “at-risk” due to a variety of different statistics. Every day I sought to plan lessons that not only were rich in academic content and student engagement, but also focused on building a classroom culture of strong future leaders and community advocates. While I had always been involved with the Herma Heart Center on various levels because of my family’s deep connection, I was a teacher. I loved being a teacher.

In 2015, I got a call. The Cardiac Neurodevelopmental Follow-Up Program, one of the HHC’s leading whole-child focused programs, was expanding and looking to hire a School Intervention Specialist after they noticed a very high need for multifaceted school intervention in students with complex health needs – specifically in the area of pediatric cardiac neurodevelopment. The job requirements outlined a liaison-type service, with the goal of working to ensure clear and consistent communication between the medical staff, the family, and the child’s school at all times. I began researching far and wide. I wanted to learn everything I could about how CHD affects a child’s neurodevelopmental functioning and what type of supports schools have in place to modify for or accommodate these children. All of my searches came up empty! There was nothing. While significant literary research supported that children with complex health needs and chronic illness are at a greater risk of reduced student engagement, higher disruptive behavior, lower academic achievement, an increased exposure to bullying (among many other well-documented negative educational outcomes), structured programs for school re-entry and intervention are rare. In this moment I knew that I needed to step in to fill a role much larger than a classroom teacher.

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The School Intervention Program officially “went live” in February 2015. I began with a very focused population of heart transplant patients that pinpointed those re-integrating into school post-transplant, but also offered intervention services to all of our heart transplant patients no matter how many years post-transplant they were. The response was huge. My patient population quickly grew to all heart transplant patients (including those wait-listed for transplant) and several patients with advanced heart failure who were anticipating a future transplant. My pilot study served 55 cardiac patients, ages 3 (preschool) to 24 (college). The schools’ concerns that were addressed included: attendance and absence support, special education support, attention and behavior plans, and documentation/medical record communication – just to name a few of the big categories. Of those 55 patients, 57% have exited the program with their school concern fully resolved, 36% still receive ongoing school intervention but are making great progress towards their school goals, and 7% transitioned to different medical centers where school intervention could no longer be followed. I’ve witnessed one of my high school student graduate with his class just 5 months post-transplant, I’ve heard from a school nurse that she could not believe a student is finally getting to live a “normal” life without any medical interventions needed during the school day, and I’ve helped a mom send her 7 year old to school for the first time because she finally felt confident the school could handle his needs.

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You may be thinking, “That’s great, but my child did not have a transplant. This doesn’t help us.” I am hear to tell you that it does! By doing a formal pilot study on a small population of patients and proving there is an urgent need for formalized school support, I am establishing both attractive outcomes data and the sustainability of this type of position. I frequently share these outcomes with colleagues, speak about my work at a director and leadership level, and even present at international conferences just so people can see how this seemingly non-medical work is directly related to improved medical outcomes. And guess what? People ARE listening.

 

Herma_Kyle

I am excited to be sharing with you over the next couple weeks to help bridge the very different worlds of medicine and education to ensure that children with complex health needs, specifically CHD, are not falling though the gaps. Here’s to a great school year!

 

Kyle Herma is the School Intervention Specialist serving the Herma Heart Center at Children’s Hospital of Wisconsin. Kyle has been at Children’s since February 2015 conducting a formal pilot study on school intervention and the impact it has on a child’s overall medical outcome and quality of life. Prior to this position, Kyle was a teacher at Milwaukee College Prep’s 38th street campus. In both roles, Kyle has shown her dedication to serving children who are placed at-risk for school failure and ultimate mission to achieve equal access to quality education for all.

Your Health vs. Your Career

This week we hear from Samantha Michaud, a CHD warrior, who speaks about how CHD has affected her career opportunities in life. And how your health ultimately has to come before your career. 

I was born a healthy (or so they thought) baby. I spent the first 2 months of my life slowly dying and no one knew what was wrong. It wasn’t until my 2 month check up that my family doctor heard something wrong with my heart. I was immediately sent to the hospital where they did an echocardiogram on my heart & saw something wasn’t right. I was then sent to Toronto Sick Kids via air ambulance. More tests were run. After a few days they decided to do a heart catheterization to confirm their suspicion. I was born with a congenital heart defect called Tetralogy Of Fallot. A few days after that I had full blown open heart surgery.

Overall, I had a rather normal childhood I was able to play hockey, volleyball and even flag football. I didn’t start having issues again until I was an adult. Later on in my adult years I kept complaining of fluttering in my chest. It was shoved off as anxiety. Then I got pregnant at 20 years old. My previous years tests results showed I was able to carry a pregnancy. Yay! When I was 24 weeks pregnant I had a halter monitor done due to the fact I blacked out one day at work and had to leave. It turns out that my blacking out episode was an episode of an arrhythmia called Ventricular Tachycardia. I was happy I finally had answers as to why I didn’t feel well sometimes and why I felt fluttering in my chest. But after one episode where I nearly fainted giving someone a shower, I knew my time had come. I knew I had to leave my job behind. You see, as someone with CHD being around heat makes me feel unwell. But having Ventricular Tachycardia secondary to my Tetralogy of Fallot just made that day all the more worse. My heart rate began to speed up, my heart began beating funny and I started to feel weak and faint. I got out of my clients house for fresh air, and called the office to go home. A week later I quit my job due to my health reasons.    

 

I was devastated that the stress from my job could cause so many issues that I would have to quit. My job requires me to deal with stress. Taking care of the sick, disabled & elderly was my calling in life, but due to the stress it caused me to deal with on the daily, I left my job. It was really hard to deal with as I loved my job and I loved what I did. But for my health I had too.

Leaving my job as a personal support worker has left me feeling helpless. It was a job I thoroughly enjoyed. I felt like I was giving back to healthcare, for what they have done for me. I helped people of all ages and created great therapeutic relationships with everyone I saw & their families. Leaving a job I really enjoyed was not the easiest decision to make. But I do see a bright future ahead of me. I have a beautiful, heart healthy, baby girl, and the opportunities are endless for the both of us.

Hello, my name is Samantha Michaud. I am 22 years old and have a 10 month old daughter. I am a personal support worker. I see a cardiologist once a year for my Tetralogy Of Fallot. I see an electrophysiologist every 3-4 months for my Ventricular Tachycardia.

Hidden Scars

At the start of the new year we often reflect on the year that has just passed, and for most of us, work and/or school is a large part of that reflection. We are kicking off the year with a series on how CHD affects patients, and families at school and work.  This post is written by an individual who wishes to remain anonymous, as they reflect back on their career and the role that CHD has played in their work. 

 

I remind myself that this time I will handle things differently.  I remind my myself that I am a grown 51 year old woman that has raised 2 kids and managed to maintain a marriage for 25 years.  This time, with this job, I will not just walk away when I can’t handle the outside stress in my life usually, brought on from my health.  This time I will communicate with my supervisor and explain to he or she what is going on in my life and have them help me find a solution, after all that is what a grown up does.

 

Call me lucky, but four fulfilling careers later, I am still working a great job that holds my interest, and I am surrounded by wonderful co-workers.  I know that there will be another health emergency in the future, that is just the way life is for a person with CHD.  I tell myself, when the next health incident happens, I will not give 5 days notice to an employer, like I did with the last job.  I will not just close down the doors on a business I worked so hard to build, like I did two careers ago. And I definitely will not walk away from an amazing career as an FBI analyst (a dream I had since I was young) like I did after I landed my first job out of college.

 

My parents taught me from a young age to find a job with health benefits.  They thought I should be a teacher, after all, as a teacher you will have summers off and “the rest during the summer will be good for you.” I understood the message, they really meant “be good for your heart.” Maybe that is why I leaned towards a job with government, the need for health benefits has been ingrained since I was young.

 

When I was growing up the environment was different, you hid your scars, you hid your health issues.  I remember applying for my first job it was with the FBI.  I filled out the 30 page background check form and stopped when I got to the medical section.  How do I spin this?  Do I put down congenital heart disease?  Do I write down Tetralogy of Fallot?  What if I write, “Hole in the heart – corrected 1972.”  That is not a lie I thought to myself, so I went with that explanation, they could ask for more information if they needed it.  Of course my education helped me land that first job, but I am still convinced that things would be different if I had fully disclosed my medical history.

 

No one ever taught me how to communicate my health issues with my employer.  I have been taught how to write a resume and how to interview. I have an excellent work ethic.  However, I am 51 and still don’t know how, or when, to talk to an employer about my health.  I know my future holds a pacemaker battery replacements, pulmonary valve replacements, and much time in the cath lab.  When should you discuss your health with your employer? Should you be upfront from the beginning or should you wait until an emergency and try to explain why you won’t be in for a week or two?  I know the best option lies in the middle.  However, I am at a loss as to where that balance is.  I guess you need to factor in the employer, job, personalities, and work environment.  I wish there was some magical formula one could use to decide at what point disclosure is best.

 

I look back with my career history with regret on how I choose not to be upfront regarding my health history.  I tell myself, this time I will handle things differently, but I know I will probably continue on my current path of non-disclosure.

Always Enough – Rebeka Acosta

In our last post on the series of gratitude, we hear from Rebeka Acosta. Rebeka recognizes how there are so many people to be grateful for, and how those people form a community and help you through the frustrations of life. 

Gratitude turns what we have into enough. -Unknown

At the end of any given day, when the dragons have been slayed, I crash into a puddle of physical and emotional exhaustion. Special needs parenting is hard work and it is terribly easy to let it swallow you whole. There are far more places to hide and wallow than there are rainbows to jump through.

And that is precisely why it has to be enough.

Oh, let me be a part of the narrative

In the story they will write someday

Let this moment be the first chapter.

Where you decide to stay

And I could be enough

And we could be enough

That would be enough

-Hamilton the Musical

It took me a few years to truly welcome the joys and pains of parenting special kiddos. I suppose it is easy enough to find gratitude in the things that make life easier, but as the child of a social worker and teacher, I am always drawn to my fellow humans. No matter how quick the moments come and go, I’m always trying to find the bright spot.

Every year as the holiday season begins, I love addressing cards to friends and family. As I sat at the kitchen table late one night last week, with the dogs curled at my feet, one of the boys appeared in tears. My initial internal reaction was frustration. Everyone was finally in bed. It had been a long day. Couldn’t I get just one hour of peace to address these cards?!

I took a deep breath. Ten minutes is enough, I thought. It will just have to be enough.

He crawled into my lap even though he had far outgrown it. He whispered quietly and asked who the cards were for. We spent the next hour talking about each person and adding a few to the list. This morning I revisited the pile of cards and sitting on top were the five my kiddo had requested, with a sticky note telling me why they were important.

Dr. K: for being my first doctor and teaching Mommy to take care of me

Dr. Becky: for saving Kato’s life (his dog)

The Apple Store: for cheering for me and teaching me to code

Dr. J and my Boston team: you helped me live

Inspirada (our neighborhood): for being my home

May you each find gratitude in the connections you forge and mountains you summit. May you slow down and find the bright spots in the simple moments. And may it always be enough.

 

Rebeka Acosta lives outside Las Vegas with her husband, two heart warriors and
two Great Danes. A researcher by nature and healthcare finance coordinator by
training, she enjoys keeping up with congenital cardiac literature and always
reviews insurance claims line by line. She recently passed the national exam to
become Nevada’s first Board Certified Patient Advocate.
Before relocating to Nevada, Rebeka was a founding member of the Washington
chapter of PCHA. She now volunteers on the National Steering Committee and
enjoys attending the annual legislative conference and transparency summit. She
is especially invested in advocacy for adopted patients and patients of color.
Rebeka welcomes connections at racosta@conqueringchd.org.

Angels in Scrubs

In times of hardships, it can often be difficult to maintain gratitude. This week, Heather Speakman shares with PCHA how hardships can often teach us the most about gratitude.

It’s the Eve of Thanksgiving and I can’t help but feel overwhelming gratitude to the team of people that take care of our sweet Madison. I know that there are a few hundred stories and posts of a very similar sentiment but I’ve never been one to let someone else tell my story. So here’s my version

To all of the Doctors, NP’s, and PA’s, I see you.

Image result for gratitudeYou’ve explained procedure after procedure, making sure I understand what’s going to happen. You’ve stopped what you’re doing to comfort me when my daughter’s heart rate dropped to 50, assuring me why it happened and how you’re going to fix it. I’ve gotten update after update and I see the look on your face when you wish it was better news. I see the hope in your eyes that she will get better and that you will get her in my arms no matter what. I see how tired you are but no matter how busy it is you make sure everyone is taken care of, often hopping from room to room with coffee in hand. I see that you’re up all night and you still greet me with a smile and ask how I’m doing. I’ve heard your voice on the phone in the middle of the night asking for consent, I know it can’t be easy to ask for permission in a time like this but thank you for being kind. I’ve heard you say, “Are you coming in soon?” knowing that you have to sit me down and have a really hard conversation about what another blood clot could do to my daughter. You’ve greeted me at the door because you couldn’t wait to tell me the good news that she’s going to come off Ecmo. I’ve high-fived you in rounds because we made it over a huge bump in the road. You’ve made it easy to report back to family what the plan is for the day and what it means so I can remember it easily. You’ve looked me in the eyes and promised that you will tell me when it’s too much because I didn’t want to be that mom who put her baby through unnecessary procedures if the result was going to be the same. You’ve also given me the look that says you’re up for the fight and you’ll do everything in your power to save her.

I’ve had to call your name quickly before you left her room to tell you that I think it’s time, she’s tired. With tears in your eyes, your hand holding mine you slowed your breath and regrettably agreed. My heart wasn’t the only one breaking, yours was too. You’ve come to visit, paying your respects and giving your condolences, telling us that she fought and fought hard. You’ve empowered me, reminding me that this is OUR journey with Madison, no one else’s.Image result for gratitude

To the CICU nurses, I see you.

No matter how many times that pump goes off or the monitor beeps you’re there. You’re always asking me if I’m okay, even if you’re not our nurse that day. You’ve seen our baby post op and assured me that there will be ups and downs in the next 24 hours. You’ve let us in the room even when you weren’t ready because you knew we could handle it. You’ve kicked us out so we can get lunch and promised to call if anything changes. I’ve seen you on your hands and knees checking chest tube drainage, making sure she’s not too sleepy or not too agitated on her pain meds, changing countless dressings on her lines. You’ve been able to get IV’s in places like her head, and feet. You’ve hugged me and told me to go home after a surprise phone call in the middle of the night. Telling me that you’ll take good care of her. I’ve seen you try not to laugh when we’re being goofy and super inappropriate and eventually you break down and participate. I hope you know that we love it when you talk to us and ask questions about our life outside of the hospital. It makes me feel like there WILL be a life outside. I love that you talk out loud when you’re trying to figure out why she doesn’t look right, it gives me comfort to know that you’re not afraid to tell us when something is “off”. Although I must say, you have pretty good poker faces. There have been times where you come to us with a problem but you never come without a plan. I’ve seen the look on your face when you have to come in after the doctor just gave us bad news. Even still, you ask if you can get us anything. I wish you could see the look on your face when I ask for vodka and Xanax, I never said it was for me ;0). You’ve told me to get my kisses and love in before each surgery or procedure. You’ve celebrated victories with me, big and small. I love that you come to say hi, even if you’re busy. You’ve greeted me with a smile and a full report if I missed rounds. I’ve laughed with you until my cheeks hurt.  You let me hold my baby girl after 28 days on the ventilator because you knew I needed it. I’ve seen you work hard in other rooms when it wasn’t an easy day and cover each others lunches sometimes jumping from one room to another.

You’ve talked to us about Madi’s prognosis and helped us ask the hard questions. I’ve seen you love on her like a proud auntie or fairy godmother. You’ve protected our privacy fiercely, drawing curtains and adding a sign to the door. You’ve done some impressive acrobatics hopping up and down from counters so Erik and I could switch spots, despite the ventilator and a few dozen lines in the way. I’ve seen you check on me from your desk, making sure I was comfortable as I held my baby girl in the middle of the night for the last time. You assured me that it’s no trouble at all to put her back in bed if I needed to rest.

You volunteered to be her nurse on the hardest day of my life, one of the many reasons why I think about you every day. You brought clothes from home because you didn’t know if I had anything to change her into. You’ve granted me every wish on my sweet girl’s last day on Earth, minus the Xanax and vodka. You’ve laughed with me and let me cuss like a sailor, giving countless hugs and allowing me to be whatever I needed in that moment. I’ve seen the tears in your eyes as you placed Madi into Erik’s arms so we could say goodbye to our brave, strong girl.

To the “Special Teams” I see you.

I’ve seen you talk to my daughter in your baby voice and call her peanut.  You’ve checked setting after setting on her ventilator, rooting for her every step of the way. You ask me how she’s doing, even though you already know she’s having a great day. You always smile and say hi when you’re walking down the hall or offer a wave from a distance. You’ve done trial after trial to make sure she’s ready to be off the vent.

You gave Madi her first and only Christmas tree, decorated with bells and Beads of Courage, it will stay up year long at our house. No matter how many times we had to switch places to hold her, you were always there with a smile and saying “no problem at all.”

You come and chat with me to let me forget about how tough this can be. I get to tell you the dumb thing I did that week. You’ve listened to me happy or sad and remind me that it’s okay to not be okay. You ask if we’re eating and sleeping. You’ve offered meal vouchers on nights when we didn’t want to leave. I’ve seen you after a rough weekend and distract me with a funny story. You promise that if you come visit it’s not because someone called you to check on me.

You’ve allowed me to speak freely and openly without judgement. I’ve told you how hard this has been financially. You’ve provided resources and help when I was ashamed and embarrassed, assuring me that something like this can cripple a hundred thousand dollar savings account. You’ve called us to tell us someone adopted us for Christmas, I was so relieved.

You were there when I had to tell my thirteen year old daughter that her sister wasn’t going to come home, you listened as I apologized to her for what’s to come. I’ve seen you make Madi’s hand and foot prints, asking Tristyn if she wanted to help.

You’ve given me the power to be an advocate for my daughter, helping me make some really tough decisions. You’ve rallied the troops and packed her hospital room so I could read this very blog to all of you, that moment was incredibly special and I’ll cherish it always.

We’ve prayed together after our sweet angel gained her wings. You’ve helped usher my family and I out of her room, telling me we could stay as long as we wanted but you knew I couldn’t take it anymore. You’ve promised to stay with her until she had to go.

I’ve heard your voice on the intercom so I can come back to see my baby. You’ve given me a red sticker everyday and make sure I’m not full of icky germs. The occasional chocolate is a really good plus. You’ve stocked carts and given me bottles and labels galore.

I know that there are many more angels in scrubs and business casual gear that we don’t see but we appreciate you and everything you do to make sure our daughter is taken care of.

I am constantly telling my friends and family how amazing you all are. Sometimes they even ask for you by name. We pray for you everyday. Being in the cardiac ICU is rough and I hope you know that we appreciate and love you. You’ve become a special part of our extended family and made this journey that much easier.

I expected to grieve the loss of my amazing daughter but what I wasn’t expecting was grieving the loss of her amazing medical team. We miss you all so much.

Thank you doesn’t even begin to cover it but this thankful, grateful mama is going to tell everyone.

Heather Speakman has been married to her high school sweetheart Erik for 13 years and has 4 children, Tristyn Gage, Hayden and Madison. Madison was born with a heart defect called hypoplastic left heart syndrome with heterotaxy and 3 other defects. She lived for 41 days before she succumbed to complications of her heart defects and passed away on November 30th, 2017. Since Madi’s passing Heather has helped raise awareness for congenital heart defects. Heather is an avid blogger, and blogs as a way to help cope with her grief and shares her feelings in the hopes that people will know they’re not alone.

The Gift of Life – Sara Engstrom

In the spirit of Thanksgiving, we are continuing our series on gratitude. This week we hear from Sara, a CHD warrior who shares how gratitude has played a role in her life. 

At six months old, I was diagnosed with Shone’s complex, a myriad of heart defects that impacts each patient differently. My defects include a bicuspid aortic valve, parachute mitral valve, persistent left superior vena cava, and an aortic coarctation. When I was 8 months old, I had a closed heart surgery to repair the coarctation.  I am grateful for my pediatrician, who could not feel the pulses in my feet and was immediately alarmed. Without her, I do not know how long it would have been until the coarctation was discovered. Each year since my surgery, I have followed with a cardiologist who specializes in CHD in order to keep tabs on my valve function and stability. My first cardiologist made the largest impact on me in my childhood, sparking an interest in medicine at a young age. Being exposed to the hospital environment all my life, I have decided to pursue a career as a pediatric cardiologist, something that I would have never considered if it weren’t for my CHD.

I have struggled with having a heart defect from time to time and it has taken a toll on my mental health. During the dark times, I must rely on my family and friends to pull me through. I am indebted to them for all of the support that they have given me. Some have been standing by my side since my surgery over two decades ago, and others more new to my life who have been the most understanding and patient friends I could ask for. My family members have stood by me, speaking for me when I was an infant, making sure I was getting the best care I could receive. It’s definitely not something I think about every day, but my livelihood and future were in the hands of my parents, grandparents, godparents, aunts, and uncles and because of them, I am where I am today, healthy and thriving. I don’t thank them all for the loads of support that I have received over the years. When times get hard and I’m feeling lonely, I know that I can count on the wonderful people in my life to keep me grounded.

Throughout my life, I have not met many others with the same defect as me, making me feel isolated in this battle. Last year, I wrote an article talking about my CHD. A few months later, I received a message from a stranger about her struggle with Shone’s complex! This was the first time I have ever been in contact with someone with Shone’s complex. I befriended her immediately. We got to talking and I realized we have so much in common. We both love to travel, try new things, and are pursuing careers in the medical field. I am beyond thankful that she reached out to me. My relationship with her has helped me realize that it is very important to not only share your story with others but also share similar experiences and stories with people who have been through the same.

Having a congenital heart defect has given me more gifts than I can count. I am grateful for my love of medicine that aroused as a result of CHD. I am thankful for the people who have supported me and held me up through my battle, and I am grateful for the opportunities and friendships that have been given to me throughout this journey.

Sara Engstrom is a senior at Wayne State University studying biomedical physics. She plans on applying to medical school in the future to pursue her dreams of becoming a pediatric cardiologist. She lives with Shone’s Complex and is dedicated to telling her story. She loves advocating for CHD. In her free time, she likes to play the clarinet, catch up on the latest TV shows, play with her German shepherd, and spend time with her family and friends.

 

A Journey Shared – Joseph Burns

In the month of November we are focusing our attention on gratitude, and how despite all the hardships that life brings, there are so many beautiful things for which we have to be grateful. Today we hear from Joseph, a CHD warrior, studying to be a physician himself. 

 Throughout my life, I have been the recipient of numerous gifts which I will never be able to repay. I was born prematurely with a bicuspid aortic valve. My childhood was a series of constant doctor visits. It was during these early years as a patient that I developed an intimate relationship with my own pediatric cardiologist, Dr. Shailaja Nadkarni. Her presence in my life was the first of these gifts, as our relationship transformed from that of a patient and physician to student and educator to admirer and mentor. Her willingness to embrace my interest in congenital heart disease (CHD) undoubtedly set me on my current career path and her consistent support throughout my childhood and young adulthood was transformative in my choice to pursue medicine as a career.

In 2014 it became clear that I would need surgical intervention. The week of my operation was also the last week to accept my invitation to join the Class of 2019 at the Herbert Wertheim College of Medicine at Florida International University. It was during my surgery that I received my second profound gift—a chance at a healthier life afforded to me by the valve of an organ donor. This thankless, selfless sacrifice has granted me a new lease on my health and I am elated to be surviving and thriving post-correction. This anonymous gesture is one on which I reflect frequently, and I owe it to this donor to live my life to the fullest, not only for my own sake, but for his or hers as well.

During my recovery I spent time focusing on the compassionate pediatric cardiologist that I hope to become. My surgical scar lies across my chest as a reminder of that goal. I am proud of it. It ties me to my past as a patient, my present as a student, my future as a cardiologist, and the unspeakable bond that I will share with my patients and every child that has faced cardiovascular disease.

The third and most unexpected gift came to me in the Fall of 2017 when I applied for and was selected as the recipient of the inaugural Toti Mendez #23 Memorial Scholarship.

Toti Mendez, a sophomore pitcher with the FIU Panthers, was 20 when he died suddenly in 2000 from cardiomyopathy. FIU retired his jersey, number 23. His family established the scholarship and also dedicated “Harvey”, the school’s cardiac auscultation simulator in his honor.

Earlier this year, I had the distinct pleasure of meeting Ms. Maruchi Mendez, Toti’s mother. Though we had only a few moments together, it seems that we are inextricably bound by our experiences with heart disease and by Toti’s legacy. Her generosity and commitment to Toti’s remembrance that enables me to attend this institution and to chase my dreams to treat individuals like Toti and like me. Toti’s memory endures in my own work, including a dedication in my article “Disparities in Hypertrophic Cardiomyopathy: A Narrative Review of Current Literature” scheduled for release in 2018.

And so, for every encounter with Harvey, I am grateful. For every patient encounter in which I am prepared to recognize murmurs, I am thankful. For every child I will treat during my career, I am humbled. For every opportunity afforded to me during my time at this institution, I am privileged. Simply, if not for the contributions of the Mendez family and countless others, I am confident that my educational pursuits would be far more burdensome.

My journey is not mine. If not for the endless love and support of my family, friends, my donor, the Mendez family and every clinician who has treated and trained me, there is no doubt that I would not be in the position in which I find myself today. Now, as I begin interviewing for residency positions across the country, I realize more than ever that this has never been a plight of my own. Rather, with my story includes tomes of family support, of love and loss, of challenges and triumphs, volumes on the life of the donor who has granted me a second chance with my cardiac health and to the anonymous families who recognize a piece of their sons and daughters in me, who feel the magnetic bond of our scars, understanding that we are inextricably linked by our past, our present, and our future. I am elated to continue this journey as a physician, building relationships and transforming life for the welfare of all. However, this has never been a solo venture. My ambitions and my accomplishments, rather, are reflections of all of the generosity and support I have received while expecting nothing in return. It is this selflessness, this altruism that reminds me that I represent the hopes and dreams of countless individuals who have invested in my success. For this army of support and love I am eternally grateful and to have connected with a community of CHD warriors empowers me to continue to reach for my absolute potential in all that I undertake.

 

Joseph Burns is a member of the Class of 2019 at the Herbert Wertheim College of Medicine at Florida International University in Miami, FL. He is a native of Orlando, FL and is an alumnus of Stetson University. He is passionate about the arts and community engagement, having served as the Art Director of the Mammography Art Initiative and the Community Service Chair for the Panther Learning Communities. His interests include congenital heart disease and American Indian Health. He hopes to pursue a career in adult congenital cardiology.