When a Cause Finds You

The Pediatric Congenital Heart Association is pleased to welcome Jonathan Corwin as our newest blogger.  In just a few short months, Jonathan has dove in and participated in many PCHA activities from advocacy, to fundraising, and now blogging.  Welcome, Jonathan, we are so grateful you found us! If you would like to be an advocate, like Jonathan, sign up to join our CHD advocacy network, today!

There are times when you find a cause and then, there are times when a cause finds you.

My son, Lukas, was welcomed into this world in June of 2011 looking as healthy as his brothers before him, even though we knew something deadly was lurking. Having already been diagnosed with Truncus Arteriosus, it was a moment that forever changed our family and brought about experiences I never could have imagined. Lukas is why I advocate on behalf of Congenital Heart Disease (CHD). After watching my own personal heroes in scrubs and lab coats fight to save his life, how can I not? Many CHD survivors cannot advocate for themselves. How can I not?

I chose to attend the 2016 Congenital Heart Legislative Conference in Washington, D.C. earlier this year with Lukas, and it was an extraordinary experience. I was inspired among so many survivors and their loved ones, a collection of people, many of them strangers to each other, all sharing a common bond and mission. The determination to fight for this worthy cause energized the room. The conference was an opportunity to share our stories and command action with Members of Congress elected to represent us. And that is exactly what we did. There were stories filled with joy and those filled with heartache, stories of second chances and those we have lost. Sharing Lukas’ story in the fight for CHD advocacy has been one of the most incredible and rewarding experiences of my life.

Lukas Corwin

After Lukas was born, I watched helplessly over the next two weeks as he went further down the path of heart failure, while his doctors gave the rest of his tiny body as much time as possible to grow stronger. He was immobilized and intubated. As if this was not already terrifying enough, he stopped breathing due to a nerve response triggered by the breathing tube. Alone in the room with him the first time this occurred, I panicked as his color drained, alarms began to sound, and medical personnel rushed in from every direction. They began their work and openly pleaded with him to take a breath. I can honestly say I have never been so terrified in all my life. This scene was repeated a half dozen times over the next few days leading up to his first open heart operation. He came through this ordeal with flying colors and we were soon able to join him in recovery. My little boy was less than a month old and already he was the strongest person I had ever met. He underwent a second repair in 2015 and continues to be a shining example of perseverance.

For the first time ever, Lukas met someone with the same heart defect at the conference. It was a very personal moment. My son beamed while showing this young lady his scar, and she asked if she could FaceTime with him and keep in touch. I was so touched. I was forced to hold back tears. At 17, she is wise beyond her years. It is people like those we met at the conference and on this journey who will bring about change in outcomes and patient care.

lukas2

Sharing stories likes Lukas’ not only brought us closer at the conference, but were a window for Members of Congress into the importance of fighting for this cause. 160 attendees participated in meetings with our legislators as we implored them to cosponsor the Congenital Heart Futures Reauthorization Act of 2015 and make appropriations requests relevant to CHD for the Centers for Disease Control and the National Institutes for Health. We made a lot of progress and laid the groundwork for even greater successes in the future.

lukas3

I did not find this cause, this cause found me. Now, I feel the responsibility on behalf of my children, and those other CHD survivors who need a voice, to use every tool at my disposal in this effort. Too often we have potential champions for this cause who have never been asked or given the opportunity to lend their voice. I am here to ask you to lend yours. Will you join the fight for CHD advocacy and help introduce others to this life changing journey? Congenital heart disease is the most prevalent birth defect leading to infant mortality in America. That simply is not acceptable. Not by any measure. Together, we will build a coalition of legislative champions who strive to give healthcare professionals and researchers every tool they need to save lives and improve patient care.


Blogger_Corwin_JonathanJonathan Corwin lives just outside Indianapolis, IN with his 3 sons – including Lukas, who was born with Truncus Arteriosus in 2011. In addition to his advocacy on behalf of congenital heart disease, Jonathan was previously an aide to United States Senator Richard G. Lugar. In his spare time, he enjoys taking daytrips with his children, Indianapolis Colts football and Indiana Pacers basketball.

Guided Questions Tool

Ask these important questions to your care team.

Click here for a printable .pdf version of the Guided Question Tool/Questions to Ask your Cardiac Care Team.

En Español: Cuestionario de Preguntas Guidas

QUESTIONS TO ASK THE CARDIAC TEAM

It is hard to hear the words “there is something wrong with your baby’s heart.” But, there is hope! Thanks to new and better treatment, your baby’s chance of surviving is better, with the right care.

At the Pediatric Congenital Heart Association (PCHA), we believe that information is important when making decisions about the care of your child.

For this reason, the following questions were designed to help when you talk with the care team.  Some of this information may not be familiar or hard to understand.  We have included key ideas on the last page to help.  Your care team can help you understand, too.

Experts think there are certain care standards that a quality treatment center should meet.  Not all centers are the same. Some families may want to contact another center to better understand treatment options. Often, second opinions are reassuring; further building trust between you and the team you are working with.

At any time, if you feel you need help or extra support, please contact PCHA.  We do not have all the answers, but we can certainly help guide you.

For more information about congenital heart disease and links to additional resources, please visit our website at conqueringchd.org.

Information About Your Cardiac Center:

  1. How many procedures do you perform each year? How many times have you and your program performed this procedure or ones like it in the last year?  Over the last 4 years?
  1. What is the survival rate for this type of procedure at the time of hospital discharge? After one year? How do your results compare to other centers’ results?
  1. What are the most likely complications or things that can go wrong, with this procedure and how often do they happen within one year of this procedure?
  1. Do you share your results with national data programs such as the STS Database or Impact Registry to help improve care? Is this information open to the public?
  1. Do your surgeons have special training in congenital heart surgery? What other types of special training do your doctors and nurses have?
  1. How are family members included in the decision making process? How will the care team give me information, or reports, before, during, and after the procedure?

Information About Your Hospital Stay:

  1. How many days do you think my child will be in the hospital, both before and after the procedure?
  1. What are my options for when, where and how to deliver my baby? How do you work together with my OB/GYN/Midwife to prepare for my delivery and my care right before and after delivery?
  1. How do you work together with my baby’s doctor after birth and after the procedure?
  1. If my baby needs to stay in the hospital after delivery to prepare for a procedure, where will he/she be? What about after the procedure? Do you have a cardiac intensive care unit (CICU) that cares mainly for children with heart defects?
  1. Will I get to hold my baby before or after the procedure? If so, when and how?
  1. Will I be able to breastfeed my baby after delivery and again after the operation? Will my baby require a special diet? Should I expect my baby to take a bottle or breast feeding without problems?
  1. What do you do to help prepare parents to take their babies home from the hospital?
  1. What support is available for me and my family? For example, can I talk to other families that also have children with heart defects? Do you provide financial, nutritional, and mental health support?

Looking Ahead:

  1. What are the expected long-term results for this heart defect and its procedure? What is my child’s life expectancy or how long is my child expected to live? Are there other possible life-long problems that I need to watch out for?
  1. Thinking about how my child will grow and develop, what should I expect from them as a preschooler, school-age child, a teenager and as an adult?
  1. As my child gets older, does your medical care provide a plan for transitioning from pediatric to adult care?


KEY IDEAS

Procedures – These questions can be used to talk about a number of treatment options including surgery or cardiac catheterization.  Cardiac catheterization, which is not surgery, can be used to find and treat some heart conditions.   During the catheterization the doctor uses a long, thin, flexible tube that is inserted through a blood vessel.

Number of procedures – Total number of procedures performed at a center may be an indicator of quality, with caution given to centers that don’t perform many surgeries.  However, some heart defects are rare and the number of times a procedure is performed may be small, even at the biggest centers.

Survival Rate – Most babies live through their first 30 days after a procedure, a common measurement of success for surgeons.  It is important to ask about survival rates after 30 days, too.

Training – Some doctors have specialty training including certificates for pediatric congenital heart surgery.  Make sure your surgeon has this training.

Data sharing – Most centers collect information, or data, such as number of procedures, survival rates and outcomes, using national data programs such as the Society of Thoracic Surgeons (STS) Database or the Impact Registry.  Many centers now make this information available to the public.  If a center does not give their data to a national data program, or does not share their outcome data publicly, you should ask why.

 

THE IMPORTANCE OF TRANSPARENCY

At the Pediatric Congenital Heart Association (PCHA), our mission is to “Conquer Congenital Heart Disease.”  We believe that patient and family empowerment is essential to achieving this mission.

We support informed decision-making that will allow patients and families to get the best care possible.   Health information that is patient-centered (about the patient), accurate (correct), accessible (available to every person), and communicated in the right way is all part of patient and family empowerment, resulting in improved outcomes in both patient health and family experience.

Ask Your Member of Congress to Sign the Dear Colleague Letter

 

ACTIONALERT

ACTION ALERT: Urge Your Members of Congress to Sign the Congenital Heart Dear Colleague Letter

 

Act Now!

Ask your Representatives and Senators to cosign a letter lead by Senators Durbin (D-IL) and Grassley (R-IA) and Representatives Bilirakis (R-FL) and Schiff (D-CA) to the Chairmen and Ranking Members of the Labor, Health and Human Services, Education, and Related Agencies Appropriations Subcommittees urging continued federal investment in public health research and surveillance initiatives focused on addressing the lifelong needs of Americans with congenital heart disease.

This letter helps ensure that this critical funding continues and builds champions for congenital heart disease in Congress.

Here is an example of the letter that was distributed to the House.

Email your legislators, today!

Take action in three easy steps:

  1. Find your legislator’s contact information.
  • If this is your first time reaching out, use the contact form on the legislator’s website to send your email.  Visit www.senate.gov or www.house.gov
  • 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 paragraph below – adding your own personal story.

3. Send it!

You did it!  If you successfully connect with your legislator or their office, let us know you made contact by completing our online form available here.


 

Sample Letter:

Subject: Sign the Congenital Heart Appropriations Dear Colleague Letter, Today!

Dear Senator/Congressman [Fill in name here]

I’m writing to urge you to support continued federal investment in public health research and surveillance initiatives focused on addressing the lifelong needs of Americans with congenital heart disease by cosigning a letter lead by Senators Durbin (D-IL) and Grassley (R-IA) and Representatives Bilirakis (R-FL) and Schiff (D-CA) to the Chairmen and Ranking Members of the Labor, Health and Human Services, Education, and Related Agencies Appropriations Subcommittees


Every 15 minutes, a baby is born with congenital heart disease, the most common birth defect and leading cause of birth defect related infant death.  Even for those who receive successful intervention, it is not a 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.

Continued federal investment is necessary to provide rigorous epidemiological and longitudinal public health surveillance and public health research on infants, children, adolescents and adults to better understand congenital heart disease at every age, improve outcomes and reduce costs.

Demonstrate your support for this serious public health issue by signing the Congenital Heart Dear Colleague Letter.

  • In the House, please contact Kristin Seum (kristin.seum@mail.house.gov) with Representative Bilirakis or Dao Nguyen (dao.nguyen@mail.house.gov) with Representative Schiff to add your name to the Congenital Heart Appropriations Dear Colleague Letter. Deadline: Friday, March 18
  • In the Senate, join lead authors Senators Durbin and Grassley by contacting Max Kanner (max_kanner@durbin.senate.gov) in Senator Durbin’s office. Deadline: Friday, March 18

If you would like any additional information or sample report language to use, as well, please contact Amy at abasken@conqueringchd.org.

Thank you,

[Your name]

 

 


Your investment in our advocacy program provides great returns as we successfully advocate for millions of dollars in research funding.

Donate

2nd Summit on Transparency and Public Reporting

2nd Summit on Transparency and Public Reporting

 

The Pediatric Congenital Heart Association will host its second in a series of Summits to develop lasting policy solutions that will improve patient-family access to information and improve overall quality of care.

PCHA supports informed decision-making that will allow patients and families to obtain the best medical care possible.   Health information that is patient-centered, accurate, accessible, and effectively communicated is a necessary component of patient and family empowerment, resulting in shared decision-making and improved outcomes in both patient health and family experience.

As a first step toward achieving this, PCHA convened a Summit in August 2015, at the Ann and Lurie Children’s Hospital in Chicago. A multi-disciplinary group of national experts on congenital heart disease data and reporting worked collaboratively to achieve consensus on the important issues of public reporting.

Once again, the growing number of stakeholders representing surgeons, practitioners, professional societies, payers, federal agencies and policy makers, led by parents and patients, will meet at the 2nd Summit on Transparency and Public Reporting, February 16 and 17, 2016 at Johns Hopkins All Children’s Heart Institute, St. Petersburg, FL.  The conversation, building from the first meeting, will focus on mechanisms to achieve increased participation in reporting to national databases and increased public reporting.

Ongoing media coverage of hospitals and families impacted by a lack of transparency from thought leaders like CNN, Healthline and, most recently, the Philadelphia Inquirer, provide an inspirational backdrop for the meeting.

 

PCHA would also like to acknowledge Dr. Bradley S. Marino, chair of the Pediatric Congenital Heart Association Medical Advisory Board, Dr. Nicolas Madsen, vice-chair of the PCHA MAB, and Dr. Jeff Jacobs, PCHA MAB member, for their incredible efforts in the coordination of this event.

Together, we will improve access to information and improve outcomes.  Together, we will Conquer CHD!

#CHDAware – CHD Awareness Week 2016

There are a few key ways to help us raise awareness:

 

Be a part of our Crowdfunding Campaign!

CHD Aware: Raising awareness to empower patients and families with CHD.

It couldn’t be easier simply text CHDaware to 71777 to donate or become a fundraiser yourself.

Help us reach our goal of $10,000 to support our Patient Empowerment Program

  • $25 allows us to reach 1000 people through social media
  • $50 supports 10 newly diagnosed families through our guided questions program
  • $500 sponsors one hospital site visit

Become a fundraiser yourself – simply ask 10 friends to give $10! All the tools you need are right there on your phone! Any fundraiser who raises over $100 dollars will receive a free PCHA Conquering CHD t-shirt.

You can even share this graphic to engage your friends and family:

Text to donate

Be a part of our Social Media Campaign!

#CHDaware: Raising awareness of CHD

February 7-24 is Congenital Heart Disease Awareness Week. What are you going to do to spread the word about the most common birth defect?

Several of the Pediatric Congenital Heart Association programs help educate parents, physicians, and lawmakers in turn spreading awareness all year long.

However, during the week of February 7-14, the entire community comes together to help others understand how common birth defects are,  the need for research, and access to quality care.

We have created a series of social media graphics that you can use to help us reach those outside of our community. Share them, tweet them, pin them, make them your profile pic.

Make it personal – add details about your story, your experience.  Include a message about the importance of research funding or encourage others to advocate.

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

Facebook twitter-button linkedin iglogocolor

 

Where are the graphics?

During CHD Awareness Week, we will post a new graphic each day for you to share, tweet, pin…

But if you can’t wait that long, here they are:

Awareness Week 1in100Costly Most Common Birth Defect Stay in care Together, we will Conquer CHD Donate

 

Costly Need intervention

Email your Legislators about CHD!

LC 2016
As you read this, more than 150 fellow advocates are on Capitol Hill meeting with their Members of Congress as part of the 2016 Congenital Heart Legislative Conference.  They are asking their lawmakers to support research, data collection and awareness activities related to congenital heart disease (CHD).

You can participate virtually by advocating from home!

Send an email, today to your lawmakers.  The more advocates who send emails, the stronger our voice will resonate in Washington D.C.
Take action in three easy steps:

  1. Find your legislator’s contact information.
    1. If this is your first time reaching out, use the contact form on the legislator’s website to send your email.  Visit www.senate.gov or www.house.gov
    2. 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 paragraph below – adding your own personal story.
  3. Send it!

You did it!  If you successfully connect with your legislator or their office, let us know you made contact by completing our online form available here.

This is a very exciting day and a great opportunity to work together to Conquer CHD!


Sample Letter:

Subject: Support Congenital Heart Disease Research

Dear Senator/Congressman [Fill in name here]

I’m writing to urge you to support federal research, surveillance and awareness for congenital heart disease (CHD).

Every 15 minutes, a baby is born with congenital heart disease, the most common birth defect and leading cause of birth defect related infant death.  Even for those who receive successful intervention, it is not a 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.
Continued federal investment is necessary to provide rigorous epidemiological and longitudinal public health surveillance and public health research on infants, children, adolescents and adults to better understand congenital heart disease at every age, improve outcomes and reduce costs.

We urge Congress to:

  • Cosponsor the Congenital Heart Futures Reauthorization Act (S.2248/H.R.3952)
  • Provide $10 million to the CDC and $34.6 billion to the NIH in fiscal year 2017
  • Join the Congenital Heart Congressional Caucus (for House Members)

To cosponsor this important legislation (S.2248/H.R.3952) please contact Max Kanner (max_kanner@durbin.senate.gov) with Senator Durbin’s office, Kristin Seum (Kristin.seum@mail.house.gov) with Congressman Bilirakis’ office or Dao Nguyen (dao.nguyen@mail.house.gov) with Congressman Schiff’s office.  If you would like any additional information please contact Amy Basken at abasken@conqueringchd.org.

Thank you-
[Your Name – your city/state]

Don’t miss this chance to advocate from home!

On February 2nd,
we need you as we
unite our voices to
Conquer CHD!

On Tuesday, February 2nd, as part of the 2016 Congenital Heart Legislative Conference, more than 150 advocates from across the country will visit their lawmakers asking them to support research, data collection and awareness activities related to congenital heart disease (CHD).

LC 2016
You can participate virtually by advocating from home!

On Tuesday, join your fellow advocates in Washington D.C. by sending an email to your Members of Congress.

Don’t worry, we will post a reminder and provide you with a sample email for you to use.

In the meantime, here’s how you can prepare:

Find your legislators’ contact information
    • If this is your first time reaching out, use the contact form on the legislator’s website to send your email.  Visit www.senate.org or www.house.org to find your legislators and their website.
    • 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.
Understand the issues:
This year, we will be asking Members of Congress to
  1. Cosponsor the Congenital Heart Futures Reauthorization Act. Officially known as S.2248/H.R.3952, the Congenital Heart Futures Reauthorization Act was introduced in November, 2015.  You can learn more about it here.
  2. Provide $10 million to the CDC and $24.6 billion to the NIH in fiscal year 2017 to support congenital heart disease research and data collection activities.  We are asking that CHD specific funding for the CDC’s National Center on Birth Defects and Developmental Disabilities be increased to $10 million. This increased funding will help build upon existing programming working toward improved understanding of prevalence, healthcare utilization and short and long-term physical and psychosocial outcomes. In the 2016 budget, the NIH received an unprecedented increase in funding.  We are asking that this funding continue to be supported at a level of $24.6 billion to ultimately benefit biomedical research seeking to better understand causes and improved treatments for congenital heart disease.
  3. Join the Congenital Heart Congressional Caucus (for House Members). Lead by Congressman Gus Bilirakis (R-FL) and Congressman Adam Schiff (D-CA), the Caucus is a great way for Representatives to demonstrate their support for the congenital heart disease community.

We look forward to uniting our advocacy network (that’s you!) with our advocates on Capitol Hill to send a resounding message to our lawmakers in Washington.

Together, we are Conquering CHD!

Talk to you, next week!

Give CHD a Voice – #GivingTuesday 2015

 

Join millions of generous donors on what has become a national day of giving.

“Give a gift that matters.” By donating to PCHA today, you will help Give CHD a Voice.

Your gift will:​

– Build our Advocacy Network
– Train CHD advocates
– Educate our lawmakers
– Secure millions of dollars in CHD research funding

Give CHD A Voice, donate, today!

 

Give CHD A Voice 2

Shoes Worthy of a Heart Hero

The Pediatric Congenital Heart Association celebrates creative efforts to raise awareness and educate the public about congenital heart disease.  This post was written by Jacob’s mom to recognize his incredible achievement!  

In September 2014, Jacob Burris was unexpectedly diagnosed with a CHD known as a coarctation of the aorta.  His disconnected aorta was repaired surgically last year at the Oregon Health & Science University, OHSU Doernbecher Children’s Hospital in Portland, Oregon. The medical care he received was amazing.  Since then Jacob has become a heart health advocate for checking blood pressure since detecting his high blood pressure is how his CHD was discovered at the age of 12.  At home in Eugene, Oregon, Jacob passes out 1” pins that remind people in our community to ‘Check Your BP.’

Nike_Doernbecher_Jacob_Burris_Portrait_rectangle_1600

Thanks to an incredible partnership between Doernbecher Children’s Hospital and Nike, Jacob is one of six patients out of hundreds of thousands that were given the opportunity to design a one-of-a-kind pair of shoes & apparel that will benefit the hospital that saves children’s lives on a daily basis. Jacob took this opportunity to advocate for heart health and also, to share his CHD story with the hope that it will inspire others who are affected by CHDs to find strength and persevere through the rough times. Jacob designed a classic- the Air Max 95 Premium. His shoe design has a lot of ‘double meanings’ that he hopes will strike a chord with the CHD community.

Nike_DBFS_2015_JACOB_pair_hero_white_rectangle_1600

The shoe features a custom made circuit board pattern with his name worked secretly into the circuitry. The toe of the shoe is blue and transitions to red by the time you get to the heel. For Jacob, this represents his blood flowing strong through his once obstructed circuits.  The colorway doubles as a nod to his favorite superhero and inspiration, Spider-Man. On the back upper you will find Jacob’s two thumb prints overlapped into the shape of a heart and the sock liner has a heart rate monitor that says ‘I walk to my own beat.’ Jacob plays the drums and he loves that the drum beats, and so does his heart. The tongue has a “JB” logo, representing his initials. But, if you look closely you will see that the ‘B’ isn’t quite connected all the way – just as his aorta was disconnected, it actually forms a 13 which is the age Jacob was when he got to create this shoe.

jacobs heart shoe

Jacob’s shoe also features the signature of Stan Lee – Spider-Man’s creator –  in the air pocket on the sole!  When Make-A-Wish granted Jacob’s dream to meet the legendary comic creator earlier this year, Jacob took the opportunity to ask ‘The Man’ if he would lend his signature to his custom shoe. Jacob is likely the biggest Spiderman fan you will ever meet and getting his ultimate hero, Stan ‘The Man’ Lee to sign off on the shoe was absolutely excelsior! Jacob also had the opportunity to work with his team of Nike designers to develop a very stylish hat and hoodie, which go great with his Air max 95 Premiums!

jacob's apperal & shoes

Jacob hopes people in the CHD/heart health community will want to help him spread the word by wearing some of his custom designs. You won’t have to wait long; the collection will be available November 21st in select Nike stores and online at Nikestore.com with 100% of the proceeds going directly to OHSU Doernbecher Children’s Hospital.To date, this partnership has raised over $11 million for OHSU. Our family is very thankful to be part of a community with CHD heart heroes and warriors that fight for a better future for kids and adults living with CHD.

For more information about Jacob’s incredible story visit his website at www.jacobsheartstory.com and ‘like’ our page – Jacobs Heart Story – on Facebook to show your support and stay updated on Jacob’s mission to spread the word about CHDs and heart health!