We are #CHDAware – Heart Month 2019

Heart Month has arrived! Here are a few key ways to help us raise awareness throughout heart month and all year long!

Participate in our Social Media campaign! 

Use your social media talents to shine and join the #CHDAware social media storm

February 7-14, the entire community comes together to help others understand how common congenital heart defects are, the need for research, and access to quality care. At PCHA, our programs serve to educate patients, parents, physicians, and lawmakers spreading awareness all year long, but we love to join in the February Fun! During CHD Awareness Week, we strive to inform those who may not be as familiar with CHD and our organization.

In the know – Help others understand the impact of CHD and what the Pediatric Congenital Heart Association is doing about it by liking and sharing our statistic infographics. We have a lot to share this year, so look out for these graphics all month long!

Make it personal – Using the hashtag #CHDAware, add details about your story, your experience, and be sure to Include a message about an aspect of CHD that matters to you. Examples: the need for research funding, advocacy or support for fellow families. This is all about sharing how Congenital Heart Disease impacts patients and families and how we, together, can turn awareness into action. Don’t forget to tag us on Facebook, Twitter, or Instagram!

Facebook frame – As patients, parents, bereaved families, and providers we are all #CHDAware. Show your support for PCHA and spread CHD Awareness by adding this effect to your Facebook profile picture!

Invite others – we can do the work for you – simply guide them to our social media pages.  Ask them to like and follow us. We’ll make sure they STAY engaged! Click on an icon to find us!

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Month-long #CHDAware Challenge 

Join the fun: become a fundraiser and earn great prizes!

Help us raise awareness and support patients and families, all while earning awesome PCHA swag!!

Our Goal: We surpassed our initial goal $25,000 in the first 10 days of the month so we DOUBLED IT! With just a couple days left of Heart Month we are 90% of the way to raising $50,000 to support our essential programs: offering care packages, hospital training’s, patient and family resources, and so much more.

CHECK HERE FOR UPDATES: Learn about the contest, check deadlines, view prizes and updates on winners for each challenge.


Great Shirt, Great Cause!

Our newly updated heart infographic campaign has ended but because of your amazing support we were able to sell 159 shirts to raise $1400 to directly impact the lives of CHD patients and families through our programs like public reporting, the guided questions tool, care packages, and the legislative conference.

Shirts will be delivered 2-3 weeks AFTER the campaign closes (Feb.14th).

Check out the great selection of styles and colors!


Gear Up to support heart families!

Check out our online store for #ConqueringCHD apparel, bags, buttons, and morel!

Don’t forget to pick up your very own Echo the Owl! The heart on Echo’s chest represents the community’s efforts to conquer congenital heart disease, making this a must for everyone you know who is touched by CHD.

Order your very own Echo the Owl today, and we will also add one to a care package to be given to someone hospitalized due to CHD. Echo can be Purchased in our online store HERE!


At the Heart with PCHA

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.

So far, we’ve heard from Amy, David, and Jess. Find their blogs below.

Amy, Director of Programs
David, Executive Director
Jess, Marketing Coordinator
Melanie Toth, State Chapter Coordinator


Lace up your shoes & put some heart in your step!

Registration is now open to participate in the 2019 Heart and Sole 5K Run/Walk to be held at Miller Park, the home of the Milwaukee Brewers, on June 22. Hosted by local families, all proceeds will benefit PCHA. Together, we are #conqueringCHD! Check out the Heart and Sole 5k Run/Walk facebook page to stay updated! Register today at: www.mkeheartrun.com

 



Let your artistic skills shine

Break out the crayons, markers, colored pencils, or paint! Add color to the page, and bring Echo to life with our printable coloring page that the whole family can color as they wish. Or bring Echo to school to color with friends, and teach them about CHD with our new Echo fact coloring page!

Want your finished masterpieces to be featured on our Instagram? Great! Just upload a picture of your finished coloring page and submit it to Echo at Echo@conqueringchd.org

Jaguars’ Josh Lambo to Wear Cleats for Heart Defects!

My Cause My Cleats 2018

 

 

NFL / #MyCauseMyCleats

Jaguars’ Josh Lambo to Wear Cleats for Heart Defects!

Jacksonville Jaguars Kicker and Pro Bowl contender, Josh Lambo, brings much needed attention to congenital heart disease with his My Cause My Cleats charity selection for 2018. This NFL tradition will place CHD in the national spotlight, this football season. Josh will wear his cleats, recognizing PCHA during games 13,14, and 15! By highlighting CHD, Josh and the Jaguars pay tribute to patients and families affected by the most common birth defect. 

My niece was born with a hole in her heart and is regularly challenged by her condition. The Pediatric Congenital Heart Association’s goal is to conquer heart disease and I strive to bring awareness to their mission in hopes that they can help my family and others overcome hardships in their health.

Click on the Instagram post below to see Josh’s video announcement where he shares about his niece Leah, who was born with a hole in her heart. “She had to have open heart surgery when she was three months old.”  He notes that it was a difficult time for his family, “it’s a stressful time in any one’s life.”   Josh shows his incredible compassion and his reason for supporting PCHA: “For any other families that have to go through that, I want to make sure that they are well taken care of.”  We are thrilled to hear that Leah is doing well now, loving life and doing great!!!

We thank the NFL, The Jacksonville Jaguars, and, especially, Josh Lambo for bringing awareness to congenital heart disease through their support of the Pediatric Congenital Heart Association. 

More coverage:
Jacksonville Jaguar News Release 
Bleacher Report Coverage

About Congenital Heart Disease (CHD) – CHD consists of problems with the heart’s structure or the way it works that are present at birth, including related lifelong consequences. CHD is the most common birth defect, affecting 1 in 100 babies born each year.  CHD is a lifelong disease requiring ongoing specialized care, there is no cure. There is an estimated 2.4 million people living with CHD. Twenty five percent of children born with CHD need heart surgery or other interventions to survive, yet as patients grow up, fewer than 10% of adults are receiving recommended care. Congenital Heart Disease is the #1 cause of birth defect related deaths,

About the Pediatric Congenital Heart Association –  The Pediatric Congenital Heart Association’s mission is to “Conquer Congenital Heart Disease.” We are accomplishing this through collaboration with patients, parents, providers, and partner organizations to improve quality and outcomes through CHD education, support, research and awareness. Visit our website at www.conqueringchd.org

For additional information, please contact our Director of Programs, Amy Basken, at abasken@conqueringchd.org.

Find us on social media:

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Congenital Heart Futures Act of 2017 (S.477/H.R.1222)


Revised Bill Language:
H.R.1222 – Congenital Heart Futures Reauthorization Act of 2017, Engrossed Amendment Senate (12/12/2018)

 

UPDATE, December 21, 2018: The Congenital Heart Futures Reauthorization Act was signed into law. 

We can all celebrate that a federal law was passed that will help shape the future for the CHD Community, across the lifespan, through robust funding of research and data collection.

Once, again, we’d like to thank all of our advocates who came to Washington, sent emails, made phone calls, engaged through social media. Your efforts made this possible.

And thank you to Senator Dick DurbinSenator Todd YoungRep. Gus Bilirakis, and Congressman Adam Schiff, for their passion and tireless efforts to make a difference in the lives of those living with the most common birth defect.

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UPDATE, December 19, 2018:   The Amended Congenital Heart Futures Reauthorization Act (CHFRA), H.R. 1222. overwhelmingly passed the House of Representatives, with a vote of 355 – 7, showing strong bi-partisan support, once again!

The bill was presented by Greg Walden (R-OR), Paul D. Tonko (R-NY), Michael Burgess, and Rep. Gus Bilirakis all speaking passionately in favor. Rep. Bilirakis even called out several of PCHA’s amazing advocates, also thanking our leadership. 

The Congenital Heart Futures Reauthorization Act now heads to the desk of the President where it has 10 days to be signed into LAW.

Congratulations advocates, your hard work and dedication has paid off, and patients and families affected by CHD will benefit from it for years to come!

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UPDATE, December 13, 2018: Late, last night, the Senate unanimously passed the Congenital Heart Futures Reauthorization Act, under the leadership of Senators Durbin (IL) and Young (IN). Please, contact your Senators and thank them for their tremendous work!

Note: the Senate passed, under Unanimous Consent, an amended version of the House Bill. This means that the legislation is now sent back to the House so they can pass a version where the language is exactly the same.

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UPDATE, July 25, 2018: The Senate Health, Education, Labor and Pensions (HELP) held a mark-up of the CHFRA, subsequently passing it out of committee. This is an essential step toward bringing the bill to the Senate Floor for a vote.  The Congenital Heart Futures Reauthorization Act passed the House, this past February and is now making its way through the legislative process in the Senate.

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UPDATE, February 26, 2018: The Congenital Heart Futures Act passed in the House with bi-partisan support.  Please, contact your Representative and thank them for supporting this essential legislation.

Note: As part of the process in moving through the House, the wording of the legislation has been modified, removing some of the language that describes the specific actions that could be taken.

 

In February, 2017, the Congenital Heart Futures Act Reauthorization Bill was re-introduced in the Senate (S.477) and House (H.R.1222) by legislative champions:

  • Senator Dick Durbin (D-IL)
  • Senator Bob Casey (D-PA)
  • Representative Gus Bilirakis (R-FL)
  • Representative Adam Schiff (D-CA)

Current Cosponsors (Updated 12/10/18)

Senate Cosponsors – Date Cosponsored
  • Whitehouse, Sheldon [D-RI] – 4/7/17
  • Stabenow, Debbie [D-MI] – 4/7/17
  • Klobuchar, Amy [D-MN] – 4/7/17
  • Baldwin, Tammy [D-WI] – 4/7/17
  • Coons, Christopher [D-DE] – 3/7/18
  • Nelson, Bill [D-FL] – 5/10/18
  • Brown, Sherrod [D-OH] – 6/26/18
  • Young, Todd C. [R-IN] – 8-01-18
  • Wicker, Roger F. [R-MS] – 11-15-18

House Cosponsors – Date Cosponsored
  • Pocan, Mark [D-WI] – 3/28/17
  • Connolly, Gerald [D-VA] – 3/28/17
  • Soto, Darren [D-FL] – 3/28/17
  • Evans, Dwight [D-PA] – 3/28/17
  • Holmes-Norton, Eleanor [D-DC] – 3/28/17
  • Murphy, Stephanie [D-FL] – 3/28/17
  • Swalwell, Eric [D-CA] – 3/28/17
  • Loebsack, Dave [D-IA] – 3/28/17
  • Stivers, Steve [R-OH] – 3/28/17
  • Webster, Daniel [R-FL] – 3/28/17
  • McMorris-Rodgers, Kathy [R-WA] – 3/28/17
  • Abraham, Ralph [R-LA] – 3/28/17
  • Guthrie, Brett [R-KY] – 3/28/17
  • Bost, Mike [R-IL] – 3/28/17
  • Mullin, Markwayne [R-OK] – 3/28/17
  • Nolan, Richard [D-MN] – 3/29/17
  • Fitzpatrick, Brian [R-PA] – 4/3/17
  • Collins, Chris [R-NY] – 4/4/17
  • Velazquez, Nydia [D-NY] – 4/6/17
  • Ros-Lehtinen, Ileana [R-FL] – 4/20/17
  • Sessions, Pete [R-TX] – 5/3/17
  • Griffith, Morgan [R-VA] – 5/19/17
  • Ellison, Keith [D-MN] – 5/23/17
  • Moulton, Seth [D-MA] – 6/26/17
  • Cardenas, Tony [D-CA] – 7/13/17
  • Walberg, Tim [R-MI] – 7/13/17
  • Meehan, Patrick [R-PA] – 9/5/17

Are your legislators on the list?

If not email them, today!!!


Here’s more information about the CHFRA:

Original Congenital Heart Futures Act

First passed into law in 2010, the bipartisan Congenital Heart Futures Act was groundbreaking legislation authorizing research and data collection specific to Congenital Heart Disease.  This law called for expanded infrastructure to track the epidemiology of CHD at the CDC and increased lifelong CHD research at the NIH.

Since the enactment of the Congenital Heart Futures Act, Congress has appropriated $11 million to the CDC for these activities. The Congenital Heart Futures Act also urged the NHLBI to continue its use of its multi-centered congenital heart research network, the Pediatric Heart Network (PHN) that help guide the care of children and adults with CHD. Together, these efforts have improved our understanding of CHD across the lifespan, the age-specific prevalence, and factors associated with dropping out of appropriate specialty care.

We are excited that the reauthorization of this important law will allow the CDC and NIH to build upon existing programs and focus on successful activities addressing this public health need.  First re-introduced in 2015, the CHRFA did not get passed during the 2015-2016 Congress.  It was reintroduced in February of 2017 with some changes to the language to help forward movement of the bill, but the basic intent of the legislation is the same.

Key Aspect of the new Reauthorization Bill

The CHFRA continues these important activities and builds on them by:

  • Assessing the current research needs and projects related to CHD across the lifespan at the NIH.The bill directs the NIH to assess its current research into CHD so that we can have a better understanding of the state of biomedical research as it relates to CHD
  • Expanding research into CHD. The bill directs the CDC to continue to build their public health research and surveillance programs. This will help us understand healthcare utilization, demographics, lead to evidence-based practices and guidelines for CHD.
  • Raising awareness of CHD through the lifespan. The bill allows for CDC to establish and implement a campaign to raise awareness of congenital heart disease. Those who have a CHD and their families need to understand their healthcare needs promote the need for pediatric, adolescent and adult individuals with CHD to seek and maintain lifelong, specialized care.

This comprehensive approach to CHD – the most prevalent birth defect – will address a necessary public health issue and lead to better quality of life and care for those with CHD.

Here is the complete text as introduced in the House on 11/5/15. There are differences between how the bill in the House and Senate are written, based on key factors in the political process for each.  This is anticipated to be reconciled later on in the bill passage process.

If you have any questions about this legislation, please contact our Director of Programs, Amy Basken, at abasken@conqueringchd.org.

If you are interested in becoming an advocate for this important issue, visit the advocacy section of our website which contains information about signing-up, as well as tools to help you be an amazing advocate.

Together, we will CONQUER CHD!


Sample email:

Send an email, today!
Sending an email is simple!!

  1. Find your legislator’s contact information.
    1. Visit  www.senate.gov or www.house.gov
    2. If this is your first time reaching out, use the contact form on the legislator’s website to send your email.
    3. If you have identified the Health LA, or had a previous contact with your member or a member of their staff, please feel free to use the direct email address you were given.
  2. Copy and paste the sample email, below, and personalize:
    1. Include your legislator’s name
    2. Add your own personal story where indicated
    3. Sign with your name, city, state and contact info
  3. Send it!

—— SAMPLE EMAIL —–

Dear Senator/Representative XYZ,

As you are working on appropriations requests for FY2018, I urge you to show your support for continued funding of essential congenital heart disease-related public health research and surveillance initiatives at the Centers for Disease Control and Prevention.

Congenital heart disease is the most common birth defect and the leading cause of birth defect-related infant mortality. Nearly one third of children born with CHD will require life-saving medical intervention such as surgery or a heart catheterization procedure. With improved medical treatment options, survival rates are improving with a population of 2.4 million and growing. However, there is no cure. Children and adults with congenital heart disease require ongoing, costly, specialized cardiac care and face a lifelong risk of permanent disability and premature death. As a result, healthcare utilization among the congenital heart disease population is significantly higher than the general population.

As part of these ongoing public health surveillance and research efforts, the Centers for Disease Control and Prevention recently published key findings that report hospital costs for congenital heart disease exceeded $6 billion in 2013.

Congenital Heart Disease is common and costly, and attention to the needs of this community is critical.

We urge Congress to cosponsor the Congenital Heart Futures Reauthorization Act (S.477/H.R.1222). To cosponsor this important legislation please contact Max Kanner (max_kanner@durbin.senate.gov) with Senator Durbin’s office or Shayne Woods (Shayne.Woods@mail.house.gov) with Congressman Bilirakis’ office.
This is important to me because: (ONE-TWO SENTENCES)
Share your story briefly, here.

Odds are, someone you know has been impacted by the most common birth defect.

Join us as together, we are #ConqueringCHD.

Sincerely,
Your Name
Address

“Taboo” ACHD Activities

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, with CHD. Due to the sensitive nature of this topic our blogger has asked to remain anonymous.  

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.

Action Alert: Tell your Representative to Sign-On

In December 2018, the Congenital Heart Futures Reauthorization Act became law.  The law authorizes, or allows for, $10 million in research, data collection, and awareness activities at the CDC over the next 5 years.  This is 2.5 times the current funding of $4 million.

Therefore we need to strongly advocate for full funding of the $10 Million in the budget for Fiscal Year 2020, or FY2020.

One way to do that is to encourage your Representative to sign their name to the Dear Colleague Letter that is being circulated in the House.  The Senate is also working on one for the Senators, and we will share it as soon as it is available.

 


Email your Representative, today!  (Remember, you can email their staff, too)

Here’s how:

1. Find their contact information

You may have it on a business card

You can visit House.gov to get the phone number. You can call and ask for the email address of the Health Legislative Aide

2. Send a brief email – edit the final paragraph to represent your relationship to CHD

Dear xxx,

I’m writing to ask you to support our congenital heart disease appropriations request for the CDC. We urge Congress to provide, as authorized by the Congenital Heart Futures Reauthorization Act, full funding of $10 million in FY2020 to the Congenital Heart Failure program at the Center for Disease Control and Prevention’s National Center on Birth Defects and Developmental Disabilities to support surveillance and awareness activities to address the public health impact of congenital heart disease across the lifespan.

You can show your support, today by adding your name to the Dear Colleague Letter being circulated by Representatives Bilirakis and Schiff.  You may do so by contacting Shayne Woods (Shayne.Woods@mail.house.gov) in Bilirkais’ office.

Here is a link to the sample letter: http://conqueringchd.org/wp-content/uploads/2019/03/LHHS_CHD-Approps-Letter-FY2020.pdf

As a constituent and patient with congenital heart disease (parent of a child with CHD / sibling / friend) thank you, again, for your support!

Sincerely,

(your name)

 

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.

via GIPHY

 

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.

via GIPHY

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.

 

 

 

2019 CHD Awareness Fundraising Challenge

 

Help us raise awareness and support patients and families all while earning awesome PCHA swag!!

Our Goal: $50,000

Yep, it’s double our original goal! You guys are amazing!

It is so easy to join the campaign

Click here to create a Facebook fundraiser, then:
  • Extend the end date to 2/28 to get in on all the fun!
  • IMPORTANT: Add “CHD Awareness” to the title so we can keep track of your success!
  • Share with all your friends to reach your personal fundraising goals and earn prizes!!

Don’t have Facebook? You can still help us reach our goal by donating to PCHA during the month of February.  Donate $100 or more “in honor of CHD Awareness” and you can also receive our exclusive #CHDAware 2019 t-shirt.


CHECK BACK HERE FOR UPDATES:

We’ll share new contests and deadlines
We had hoped to share winners, too, but there is a lag in Facebook’s reporting.  If you are eligible to receive any of the prizes from our contest, you will be notified in early March and asked to complete a brief survey so we can get your prize(s) mailed to you!

CHD WEEK CHALLENGE Runs February 7-14: Get 10 unique donations of $10 each and receive a PCHA pint glass.

T-Shirt Winners: Wow, we have too many to list.  You can earn your t-shirt by raising $100!

Congratulations to Artyom and Taosies who one the swag bag in our First Day Fun Contest.

$100 Challenge
(Ongoing)
Raise $100 in the month of February and earn an exclusive PCHA #CHDAware T-shirt
$1000 Challenge
(Ongoing)
Raise $1000 in the month of February and earn a PCHA Stadium Blanket
First Day Fun – (ENDED)
February 1
February 1 (only!)Set up your fundraiser on February 1st and be entered to win a canvas swag bag.

Winner: Artyom & Taosies’ CHD Awareness Fundraiser for PCHA

CHD Week Challenge (Ended)
February 7-14
Every fundraiser who gets at least 10 unique donations of $10 or more will win a PCHA pint glass
CHD Week Bonus Challenge (Ended)
February 11-12
Each fundraiser who receives a donation of $25 or more will receive a plush Echo