Save the Date: 2016 Legislative Conference

Save the Date

Mark your calendar!

The Adult Congenital Heart Association,
Children’s Heart Foundation,
and The Pediatric Congenital Heart Association
invite you to attend

Congenital Heart Legislative Conference 2016

February 1-2, 2016
Liaison Capitol Hill, Washington D.C.

Your voice matters as we unite to educate our members of Congress about congenital heart disease.

  • Learn about current CHD activities in Washington D.C.
  • Learn how to effectively tell your story.
  • Connect with other CHD patients and professionals.
  • Share your story with your members of Congress.
  • Inform your legislators about the key policy issues including the need for research and data collection.
  • Make a difference on behalf of those living with CHD!

More information and online registration will be available this fall.

Summit on Transparency and Public Reporting of Pediatric and Congenital Heart Disease Outcomes

The Pediatric Congenital Heart Association was thrilled to have the opportunity to host the recent Summit on Transparency and Public Reporting.  Although, it is hard to capture the importance of this meeting on paper, below is a release summarizing the event. We are certain that you will continue to see the impact of this in weeks and months to come.

Summit on Transparency and Public Reporting

Hearing that there is something wrong with your baby’s heart is devastating. In the face of this news, parents simply want what is best for their child.  This was the case for Amy and Brian Basken, the parents of Nicholas.  Nicholas was born with a heart defect that required surgery when he was just 3 days old. “I felt out of control,” recalls Basken. “Looking back, I was asking questions that didn’t matter, when I should have been asking how well they were able to take care of my child.”

Basken is now co-founder and Director of Programs at the Pediatric Congenital Heart Association (PCHA).  Their mission is to “Conquer Congenital Heart Disease.”  PCHA believes that helping patient and family empowerment is essential to achieving this mission. “I want to help others get the vital information they need so they don’t have to feel the way I did.”

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 informed decision-making and improved outcomes in both patient health and family experience.

As the first step toward finding a lasting policy solution, the Pediatric Congenital Heart Association was honored to host the Summit on Transparency and Public Reporting of Pediatric and Congenital Heart Disease Outcomes at the Ann and Robert H. Lurie Children’s Hospital, Chicago, Il on August 19-20, 2015.  National experts on congenital heart disease data and reporting met to discuss the history of public reporting, data collection methodology and reporting strategies. This multi-disciplinary group represented surgeons, practitioners, professional societies, payers, federal agencies, policy makers, parents and patients working collaboratively to achieve consensus on the important issue of public reporting.

Dr. Bradley S. Marino, chair of the Pediatric Congenital Heart Association Medical Advisory Board, and co-coordinator of the event noted “this is the first-of-its-kind meeting in the field where parents are driving the policy conversation in collaboration with the experts – resulting in groundbreaking solutions that will shape the future of pediatric cardiovascular disease care.”

The work of the Summit helped to define areas of consensus and opportunities, which will be outlined in a future publication.  Basken notes: “PCHA is already working on next steps – talking to policy makers, considering our options. We have momentum to make lasting change, to improve parent access to information and improve overall quality of care.”

Happy 2nd Birthday, PCHA!

Its our Birthday Birthday

We’re Celebrating!
Our 2nd Birthday and
Two Years Conquering CHD!

Look how much we’ve grown:
This list highlights our programs that have had a national impact in the last year, including the meaningful Summit on Transparency and Public Reporting** and our in demand Guided Questions Tool.Our programs work to:
Give Knowledge
  • Hosted Congenital Heart Legislative Conference*
  • Hosted Summit on Transparency and Public Reporting**
  • Participated in Hospital Site Visits
  • Presented at National Conferences
  • Launched Questions to Ask your Provider
  • Developed our Advocacy Toolkit
Give a Voice
  • Created Advocate Network Community
  • Supported Advocates to Contact Lawmakers
  • Visited Legislators
  • Informed National Policy
Give Hope
  • Promoted Federal Research Funding
  • Created Patient Centered Research Protocols
  • Shared Research Findings
  • Created Original, Inspirational Materials
  • Distribute Original Blog Posts by Parents and Patients

We need your help to continue to grow:
We want to continue these important projects, but we cannot do it without your help! Please donate to the Pediatric Congenital Heart Association to ensure we can continue to give knowledge, a voice, and hope as we work together to Conquer CHD!!

Donate Now

*The Legislative Conference was hosted in collaboration with Children’s Heart Foundation and Adult Congenital Heart Association
**Thank you to Ann and Robert H. Lurie Children’s Hospital for sponsoring the Transparency Summit

“I am Conquering CHD” Fundraising Campaign

Looking for a way to give back to the congenital heart community?   Want to do something that will make a difference for others with CHD?

Join our “I am Conquering CHD” Fundraising Campaign, benefiting the Pediatric Congenital Heart Association.

Fundraising Meme

August 21-23, 2015 volunteers from across the country will be celebrating PCHA’s second anniversary and joining together participating in fundraising activities to help conquer the most common birth defect.

Big or small, each activity helps support the vital education, research and advocacy programs of PCHA.

We have a lot of great tools to help you fund raise:

  • Advocacy Toolkit – Check out this comprehensive online guide packed full with ideas and strategies to make any fundraising activity successful
  • Personal Fundraising Pages – These pages make it easy to collect donations from friends and family near and far!
  • Fundraiser Starter Kit – Once you’ve registered your fundraiser, this kit provides you with all the files and resources you need to promote your event
  • Fundraising Network – Share ideas and learn from others who are interested in fundraising, too!
  • PCHA Online Store – Visit our store, today! Purchase fun items to raise awareness and promote PCHA during your fundraising activity. You don’t want to miss our great PCHA t-shirts, popular buttons, and unforgettable strawberry scented pens!

Start now, by checking out our Fundraising Toolkit, then email advocacy@conqueringchd.org to get your fundraiser registered and on the list, today!

“I am Conquering CHD” fundraising Activities: (last updated July 21)
Aug 21 – Toast for Tiny Hearts; Evanston, Il
Aug 22 – Purse Purge Coin Drive; Denver, CO
Aug 22 – Lunch for Little Hearts; Manitowoc, WI
Aug 22 – Purse Purge Coin Drive; Duluth, MN
Aug 23 – Mini Dance-a-thon, Madison; WI
Aug 21-23 – “I am the Change” Coin Drive; Denver, CO

 

PCHA Fundraising Toolkit

Toolkit graphicPCHA Fundraising Tool Kit

“No one has ever become poor by giving.” – Anne Frank

WELCOME!

Welcome and Thank YOU for your interest in leading a fundraising event for PCHA!  We are so grateful for your efforts and support in advancing PCHA’s mission to “Conquer Congenital Heart Disease” through education, research, and advocacy.  Please read the packet carefully and reach out to advocacy@conqueringchd.org with any questions.

IMPORTANCE OF FUNDRAISING

Fundraising plays a vital role in the growth of PCHA.  Fundraising not only helps to support PCHA and its mission financially, it increases awareness and education not only about PCHA but about CHD in general.  What’s not to love about that?!

ABOUT THIS TOOLKIT

It is all about YOU!  This toolkit is a guide to help make planning and executing your fundraising event as easy as possible.  The toolkit is here to help you with fundraising ideas, gives you helpful materials and marketing, guides you through what to do with donations, and answers any questions you might have to make your event successful and fun!

YOU ARE NOT ALONE!

You might be thinking, “Do I really want to sign up for this???”  YES!!! And we are here to help – whether that is to help you with a question here or there, or to guide you every step of the way.  We want to make sure that not only is your event a success, but that you have fun with it as well!

LET THE PLANNING BEGIN!

The PCHA Fundraising Committee

Remember, you are not selling anything.  You are providing others with an opportunity to give to a greater cause.  The biggest reason why people do not donate is because they were never asked.

 

Included in the Toolkit:

10 Tips to Get You Started

Frequently Asked Questions.

About CHD

About PCHA

About Fundraising

Fundraising Ideas

For Kids

At Work

For All

Materials and Marketing

Selecting the date and location

Promoting your activity

Fundraising Starter Kit

Thank your contributors

Share your success!

Dealing with Donations

Collecting Donations

Submitting donations

 

 

 

10 Tips to Get You Started:

 

  1. Choose the “right” activity.Consider your abilities keeping in mind size, interest, talents, goals and time.
  2. Select a date. Choose a time that is appropriate and convenient for those who will be participating.  More information can be found in the Materials and Marketing Sections.
  3. Let us know. Email advocacy@conqueringchd.org with the name, date, location and key contact for your fundraising activity.  We will send your Fundraising Starter Kit with the introductory materials you can use to ensure a successful activity. We can also help answer any questions you may have along the way.
  4. Join our Facebook Fundraising Network. This is a great resource for asking questions and learning from others.  You will be given information about how to access this resource with your Fundraising Starter Kit.
  5. Consider forming a committee. The larger the event, the more help you may want to recruit.
  6. Identify your audience. Consider who is most likely to participate and support in the type of activity you have selected.
  7. Develop a budget. Many activities don’t require any additional expense.  However, larger events may.  Identify expenses and possible sources of funds.  Consider what you may be able to have donated in order to keep costs down.
  8. Develop a timeline. This is an important strategy to make sure that all necessary steps are completed in advance of the activity.
  9. Promote your activity. Share your efforts via social media, allowing you to connect with others and build momentum for your activity.
  10. Have Fun!!

 

 

 

Frequently Asked Questions

 

About CHD

 

What does CHD stand for?

CHD stands for Congenital Heart Disease, a structural abnormality of the heart that occurs at birth with chronic secondary complications that can last throughout ones life.

 

How common is CHD?

CHD is the most common birth defect.  It occurs in nearly 1 in 100 births.  Each year approximately 40,000 babies are born with CHD in the U.S., that’s 1 every 15 minutes.

 

How serious is CHD?

Unfortunately, CHD is also the leading cause of birth defect related death.  33% of babies born with CHD will require life-saving treatment in the first weeks and months of life.  Thanks to medical advances, survival is improving.  Once an entirely fatal disease, more than 85% of babies born with CHD will live to see their 18th birthday.  However, survival is proving to bring its own challenges.

 

Is there a cure?

There is no cure for CHD.  Children and adults born with CHD require ongoing specialized care and face an ongoing risk of complications.

 

About PCHA

 

Who is PCHA?

The Pediatric Congenital Heart Association is a patient advocacy organization whose mission is to “Conquer Congenital Heart Disease.”  We are accomplishing this through collaboration with patients, parents, providers, and partner organizations in order to effectively advocate for improved quality and outcomes through CHD education, research and awareness.

 

Founded in 2013, the Pediatric Congenital Heart Association quickly filled a niche as the voice of the congenital heart patient.  Our Leadership includes more than 30 patients, parents and providers from across the country making up our Board, volunteer committees and our Medical Advisory Board.

 

Where is PCHA located?

We are a national non-profit based in Madison, WI.   However, our leadership, medical advisory board and volunteer network extend across all 50 states.

 

What percentage of my gift goes directly to programs?

PCHA works hard to ensure that every dollar given by our donors is used to make a difference in the CHD community.  90% of our funding goes directly to programs.

 

What are PCHA’s key programs?

Our activities are focused in three areas:

 

Education

Knowledge is power. PCHA seeks to empower patients and families by providing them with the educational resources they need to achieve the highest quality care available to them. Our programs are designed to reach the parents themselves, while at the same time address necessary changes to patient care systems to promote a culture of engaged patient care.

Research

PCHA understands the desperate need for research to improve outcomes for patients with CHD. We work with federal agencies, medical professionals and investigators to promote patient focused research. PCHA promotes patient engagement in research from protocol development and implementation through information dissemination.  We also advocate for robust funding mechanisms that address critical gaps in understanding of CHD.

Advocacy

PCHA seeks to amplify the voice of the CHD community to inform policymakers of the significant public health burden related to CHD. By creating a solid grass-roots foundation, we leverage this voice to successfully inform legislators, administrators, government agencies and other key stakeholders to move forward key policy changes that impact the congenital heart disease community as a whole.

 

 

Is PCHA a religious or faith-based organization?

PCHA is not a religious or faith based organization.  We do not and shall not discriminate on the basis of race, color, religion (creed), gender, gender expression, age, national origin (ancestry), disability, marital status, sexual orientation, or military status, in any of its activities or operations.

 

What is the best way I can help?

Join our network to Conquer CHD.  Supporting our mission through fundraising is an excellent first step.  Additional ways to get involved include volunteering and sharing your story. Visit our website at conqueringchd.org to learn more.

 

 

About Fundraising

 

What is a fundraising campaign?
We believe that there is power in numbers.  A fundraising campaign provides a time frame and theme around which we can work together to support the vital programs of the Pediatric Congenital Heart Association.  By participating in the campaign you can receive leadership and peer support for your fundraising efforts.

 

How do I promote my fundraising activity? Do you have a logo or flyers I could use?

Check out our Materials and Marketing section for fundraising tips, messaging and logos and to learn more about the fundraising toolkit you will receive in the mail.  Be certain to properly attribute all content (logos, images, etc) throughout your campaign.  When using the PCHA logo, you are indirectly representing the organization.  It is important to stay true to the mission of the organization.

 

Will my supporters receive tax receipts for their donations?
The Pediatric Congenital Heart Association can provide tax receipts for check and credit card donations to donors who contribute more than $50 and an accompanying donation slip. Additional instructions and printable forms are available in the Dealing with Donations section of this document.  Please note that if you are using part of people’s donations to cover event expenses, they must be informed in advance that their tax receipt will only reflect the amount PCHA receives.

 

Can a PCHA representative attend my event?
We can’t guarantee a representative. However, we often are able to attend activities near our Madison and Denver offices.  If you are interested in having a representative attend your event, please contact advocacy@conqeuringchd.org.

 

What will PCHA do to promote or publicize my fundraiser?
PCHA does not promote third-party fundraisers, individually.  During our CHD Awareness Week and I am Conquering CHD campaigns, we do provide an updated list of activities on our website through our blog.  We also regularly share a list of upcoming activities in our newsletters.

 

Can I hold a raffle or auction for PCHA?
Laws regarding events or appeals that involve gambling differ from state to state. It is your responsibility to ensure that the event complies with state laws. Tickets purchased for gambling activities are not tax-deductible.

 

Can I sell an item or service to benefit PCHA?
Absolutely.  Partnering with a business or service to raise funds for a non-profit has become a common practice.  This is called “cause marketing.”  In order to maintain positive and compliant cause marketing relationships, PCHA has established the cause marketing guidelines.

 

Will event sponsors or vendors receive tax receipts for their donations?
As a third party fundraiser, PCHA cannot provide tax receipts for donations to your event. This is because these contributions are being made to you for your fundraising effort, and not directly to PCHA. You can promote their contribution/participation on your activity specific materials.

 

I have completed my fundraising activity. Where and how do I send in my donations?
Thank you so much for supporting the Pediatric Congenital Heart Association. Please review our Dealing with Donations guidelines, for more information about submitting your donations.  Don’t forget to use our helpful tracking form!

 

 

Fundraising Ideas

For Kids

Engaging children in fundraising activities can be a powerful learning opportunity.  Include children in these activities, or work with teachers, day care, or school administration to get everyone in on the fun. Some of the following ideas can even be combined.

 

Change Makers

Purse Purge

Coin Collection

Donations for chores

Stands/Sales

Lemonade Stand

Brat/Corn/Food Stand

Car Wash

Bake Sale

Craft Sale

Concession Stand

Face-painting

PCHA T-shirts

Events

Read/Dance/Jump/Bike –a-thon

Talent show

Fashion Show

Birthday Gift Donation

 

 

 

At Work

Try some of these fun activities at the office. You can also ask if your employer offers a matching gift program and/or payroll deduction programs.

 

Jeans/Dress Down Day

Ice Cream Social

Change Makers (see above)

“Swear” Jar

Awareness Day

 

 

For All

 

Night Out

% Give-back at area restaurants

Gathering

Lunch for Little Hearts

Tea for Tiny Hearts

Toast for Tiny Hearts

Leadership Dinner

 

Stands/Sales

Brat/Corn/Food Stand

Concession Stand

Car WashBook Sale

Art Sale

Garage Sale

Craft Sale

Bake Sale

Cause Marketing (Jamberry, Pampered Chef, Stella, etc)

Events

Run/WalkGolf/Bowling Tournament

Cook-off

Fashion Show

Ice Cream Social

Pancake Breakfast

 

Pledge Challenges

Virtual Run/Walk/Marathon*

24 Hour Fast*

Read/dance/jump/bike –a-thon*

 

*Personal Fundraising Pages are perfect for pledge challenges!

 

Materials and Marketing

Selecting the date and location

Planning in conjunction with a larger event can increase participation.  There are national events such as CHD Awareness Week in March, or I am Conquering CHD Campaign in August.  Or you can find a local event, such as community garage sale weekend, larger craft fair, or during tourist season.

 

Promoting your activity

Social Media

Creating an event on Facebook allows you to share, tweet and email a link to your activity.  Change your profile or personal page to reflect the activity.

 

Email

Identify a group of potential supporters to email about your campaign.  Reach out to friends, relatives, co-workers, community group members, teachers and others who may not normally find you on social media.  Make it heartfelt; share your story.

 

Your Personal Fundraising Page

If you have a need to collect credit card donations online, you can create your own personal fundraising activity page (http://conqueringchd.causevox.com/) Through your page, you can send emails and post the page link directly to social media.  Your fundraising page also has a blogging component that allows you to keep interested people up to date on your progress.  A password to create your page will be provided with the Fundraising Starter Kit, after you submit your activity info.

 

From the Heart

Stories and photos make an impression. Throughout the promotion of your campaign, share your story and use pictures to add to the message.  You can also use our stories and photos to describe how patients and families have been impacted by PCHA.  Remind others of the difference they can make by participating in your fundraising activity.

 

Fundraising Starter Kit

Once you have selected your activity, email advocacy@conqueringchd.org to receive your fundraising toolkit.  Be sure to include the name, date and location of the activity as well as the name, email, phone and address of the primary contact for the event. We will send you a starter kit that includes the following:

 

Promotional Items:

5 PCHA promotional Cards

5 PCHA Strawberry Pens

5 I am Conquering CHD Buttons

25 Temporary Tattoos

Donation Envelope

 

Digital File:

PCHA LogosSample text

PCHA Program Summary

CHD Fact Sheet

Change Jar Printable file

Donation Slips

Donation Tracking Form

PCHA Stories

Network Privileges:

Fundraising Page Login

Access to Fundraising Network Facebook Group

 

*additional promotional materials are available for purchase on our website, including PCHA t-shirts to wear to your event.

 

 

 

Thank your contributors

This is the most important step.  We are guiding others to feel good about giving.  Let them know that they are making a difference.  Let them know you are grateful for their support.  Thank them directly with an email, or indirectly through your event page and social media.

Share your success!

Your passion is contagious.  Use social media and email to tell others about your success.  Share fundraising totals and pictures, and be sure to tag us on Facebook, Twitter and Instagram!

 

 

Dealing with Donations

 

Collecting Donations

Change Jars

Collecting change is one of the simplest ways to engage others in donating.  Any container can serve as a change jar.  A mason jar, an old wipes container, a clean food container.  Print off an “I am the Change label” you will receive in your Fundraising Starter Kit and glue or tape it to the jar.  Feel free to embellish the jar to make it more appealing.  Change jars can be carried around with you, centered on your desk, placed on-site at an event, or on the counter at the point-of-sale at any retail outlet where it can be monitored at all times. Be creative and have fun with it!

 

Fundraising Tracking Form
In order to ensure necessary tracking of donations and money received, you must record offline donation information on the Fundraising Tracking Form you will receive in your Fundraising Starter Kit.  Any incomplete entry on the tracking form will be considered anonymous.  You can remind donors that only donations over $50 will be provided with a tax receipt sent to the mailing address they provide.  To identify your total funds raised, be sure to include funds raised on your personal fundraising activity page to the form.

 

Donation Forms

Donation forms are useful if multiple people need to provide their information at the same time, someone would like to take information home to donate later, or donors would like to provide credit card information without using an online portal.  Patrons simply fill in their information, including check # or write a credit card number to make a donation and either return it to you with their form of payment, or mail the credit card information to the address on the form.

 

Credit Card

A donor can complete a donation slip with their credit card information.  Ask donors to fill in their information and let them know that credit cards are processed securely in our offices. However, we encourage any donor who would like to use a credit card to donate online via your personal fundraising activity page, or through the donation button on our website.  Both of these options are mobile device compatible and can be used at the time of your activity or event.  If using our website for donations, in the comment section, please have them indicate the name of your fundraiser in order for you to receive credit for their contribution.  By donating online, we have the necessary information to provide donors over $50 with a tax receipt.

 

Submitting donations

We can only accept credit cards or checks made out to Pediatric Congenital Heart Association or PCHA. For security purposes: please convert any cash donations to check or money order before mailing.
To minimize administrative burden, all donations should be listed on Fundraising Tracking Form which must accompany your donations. Please complete the form with your first and last name, event date and event title. Make sure the total is equal to the amount you submit to PCHA. Donations over $50 submitted without a full name and address are considered “anonymous” and the donor will not receive a receipt.

 

Sooner rather than later
In order to send donors timely receipts, please submit your donations as soon after the activity as possible.  If you are waiting for expected donations, please submit what you have, and share the rest later.  Please use a new Donation Tracking Form for each set of donations you submit.

 

Tax receipts
Monetary donations to PCHA are tax-deductible and for donations over $50, we mail receipts directly to donors using their contact information from the Fundraising Tracking Form and the Donation Forms you submit. Remember: donations PCHA receives without a full name and address are considered “anonymous” and the donor will not receive a receipt.  Important: If only a portion of the amount you raise will be donated (i.e.: “a $75 dinner reservation of which $50 will be donated”), attendees must be informed in advance that their tax receipt will only reflect the amount PCHA receives.

 

Thank you!

And remember, if at any time you have questions, please contact advocacy@conqueringchd.org

PCHA-2C-V

Research Matters: Risk and Prevalence of Developmental Delay in Young Children with Congenital Heart Disease

The Pediatric Congenital Heart Association is thrilled to bring you a new series titled Research Matters. In their commitment to make research meaningful and accessible to patients and families, members of our Medical Advisory Board have created summaries of important research and describe what it means for you.

research matters

Risk and Prevalence of Developmental Delay in Young Children with Congenital Heart Disease

By Erica Sood, PhD, Pediatric Psychologist

The journal Pediatrics recently published a study examining how cognitive, language and motor development change over time in young children with CHD.* Findings highlight the importance of repeated developmental evaluations for children with complex CHD to identify those who may benefit from early developmental intervention. You can find the complete study here.

 

About this Study:
  • The purpose of this study was to evaluate changes in cognitive, language, and motor skills during the first three years of life in children with CHD.
  • The study sample consisted of 99 children who participated in three or more developmental evaluations through the Herma Heart Center Developmental Follow-up Clinic at Children’s Hospital of Wisconsin.
  • The Bayley Scales of Infant and Toddler Development, Third Edition was completed as part of the developmental evaluation. This is a commonly used developmental test that measures a child’s cognitive, language and motor skills through a series of play activities.

 

Main Findings:
  • Most children (75%) exhibited delay in one or more developmental areas at some point during the first three years of life.
    • While delays were often mild, more severe delay occurred in 74% of children with a known genetic syndrome, 33% of children with single ventricle anatomy, and 21% of children with two-ventricle anatomy.
  • Nineteen percent of children whose development was in the average range at one year of age were later found to have a delay in one or more developmental areas.
  • During infancy, children tended to have greatest difficulty with motor skills. For children without known genetic syndromes, motor development improved over time and was typically within the average range by three years of age. Children with genetic syndromes generally continued to exhibit delays in motor skills throughout the first three years of life.
  • Children who required longer cardiopulmonary bypass time and supplemental tube feeding and who were hospitalized more recently tended to have greater difficulty with developmental tasks.
What this Means:
  • Developmental delays in children with CHD are common and should be expected. Children with genetic syndromes and those who require longer cardiopulmonary bypass times, supplemental tube feeding, or frequent hospitalizations appear to be at particularly high risk for developmental delays.
  • Repeated developmental evaluations should be standard of care for children with complex CHD to identify those who may benefit from early developmental intervention. Repeated developmental evaluations for children with complex CHD is recommended by the American Heart Association and the American Academy of Pediatrics.
    • Many of the delays exhibited by children with CHD were mild and may not have been identified without a formal developmental evaluation. Even mild delays, without intervention, can impact later development and learning.
    • In some children, delays emerged over time and may not have been identified through a developmental evaluation at a single time point.
    • When developmental delay is identified, early developmental intervention (for example, physical therapy or speech therapy) can help the child meet developmental milestones and reach his or her full potential.

For more information about developmental evaluation for children with CHD, please see the Cardiology Patient Page titled Supporting Development in Children with Congenital Heart Disease.

*Mussatto KA, Hoffmann RG, Hoffman GM, Tweddell JS, Bear L, Cao Y, Brosig C. Risk and prevalence of developmental delay in young children with congenital heart disease. Pediatrics 2014; 133: e570-e577

Sood_Erica_CJB0783_pp

Dr. Sood is a pediatric psychologist in the Nemours Cardiac Center and Assistant Professor of Pediatrics at Sidney Kimmel Medical College at Thomas Jefferson University. She received her PhD in Clinical Psychology from Temple University and completed residency and fellowship in Pediatric Psychology at Nemours/duPont Hospital for Children. She directs the Nemours Cardiac Learning and Early Development (LEAD) Program and provides psychological consultation and therapy for children with congenital heart disease and their families. Dr. Sood also conducts research on neurodevelopmental outcomes, developmental care and family psychosocial interventions for this patient population. She serves on the editorial board for Clinical Practice in Pediatric Psychology and is an active member of the Society of Pediatric Psychology’s Cardiology Special Interest Group and the Cardiac Neurodevelopmental Outcomes Collaborative. Dr. Sood provides supervision and mentorship to psychology fellows working within the Nemours Cardiac Center to promote psychologist involvement in the field of pediatric cardiology.

Breaking News: NIH multi-centered research renewed!

The Pediatric Congenital Heart Association is thrilled to learn that the NHLBI has approved a renewal of the Pediatric Heart Network for another grant cycle.  It has been approved for a 7-year grant period, with a total budget of approximately $52M.  This research network supports the necessary infrastructure for multi-centered research collaboration. We look forward to sharing more information as it becomes available!

research matters

5 Things You Shouldn’t Say to a Heart Dad

The Pediatric Congenital Heart Association strives to empower whole families dealing with congenital heart disease.  That includes you, Dad.  Thanks, Chris for the great reminder! Dad, we’ve got your back and will strive to be more intentional!

Let’s just put it out there: for a long time Dads have gotten a bad rap in the media.  We don’t know what we’re doing, we can’t clean a thing, we only care about beer, and kids?  Well they just baffle us.  It all came to a head a few years ago with this epic Clorox ad:

DumbDad1

 

That, and another diaper ad where they tested a diaper’s strength by “leaving kids with dad” really started to change things and the portrayal of Dads is shifting from more Homer Simpson to dedicated, loving parent.  I’m all about poking fun at myself – heck, you’ve seen it on my blog countless times – but I also refuse to be labeled as incompetent.  When you throw a complex Congenital Heart Defect into the mix the result is a new normal.  So here’s a few things that anyone (both guys and ladies) shouldn’t say to a Heart Dad:

1.  Man Up

The idea of toughing things out and “being a man” totally doesn’t apply to a Heart Dad, I don’t care what you say.  I could’ve never dreamt up the things we’ve gone through with Nolan…and honestly, nothing could have prepared me for what we went through.  Being a Heart Dad is emotional (another traditionally “non-man” thing) and exhausting.  When it beats you down – and it will – it isn’t a sign of how manly you are.  Even though guys have a hard time showing emotions or asking for help, we do need a lot of support from others to make it through this.

Say this instead: “Dude I can’t imagine what you’re going through.  Let me know how I can help.”  Which leads me to my next thing…

2.  Let me know how I can help (but never help)

We’ve all been subject to this one: everyone wants to help, but how many people actually show up?  I’m not trying to sound mean or ungrateful, but there are times where – YES- you need that help…and where is everyone?  The offer to help is great, but good intentions don’t equal actual help!

Say this instead: “Hey man, I wanna bring you guys dinner: how does tonight sound?”  We sometimes have a hard time asking, so just offer!

3. Does this mean no sports?

Yep, you guessed it.  My life became a failure once my son was born with half a heart and probably wouldn’t be the Yankees centerfielder of the future.  Woe is me.

CmonSon

Believe it or not – and this will shock you – some Dads are about more than sports.  Fellow men: we’ve come to grips with the reality that sports probably won’t be a big thing in our home…and it’s alright!  So what if my son may not play baseball?  He’s alive right now and kicking CHD’s butt…and that’s what I want to cheer on.

Say this instead: “Bruh: your kid’s really doing this thing!  Awww yeah!” Or something positive and supportive along those lines.

4.  Guys don’t do that / Awww must be mommy’s day off

It drives me crazy when Dads get stereotyped but it also drives me nuts when Dads stereotype one another.  In this new normal, there could be lots of things you’ll start doing that maybe you’ve never done before: groceries, more cleaning, LOTS of laundry, dispensing medications, struggling through feedings, etc.  I can’t stand it when guys have this pre-set list of duties in their heads, as if it makes you less manly to wash a dish or two.  You know what?  Tonight I helped make dinner, gave 3 kids a bath, did a load of laundry, washed a sink of dishes, fed 2 picky kids and tube fed another, swept the floor, and picked up toys off the floor, and read the kids books before bed.  To me, that’s some manly stuff right there.  Guys it’s not enough to just bring home the bacon.  You need to pull your own weight *mic drop*

Oh wait, I’m not done.  For everyone else, please don’t trivialize a Dad who is out there trying.  It’s bad enough we had to see our kids struggle for life: I don’t need your fake pity in the grocery store.  Heart Dads do a great job of taking care of their kids…it’s not “Daddy is the babysitter” time or “Mommy’s day off.”  It’s called being a parent. *now the real mic drop*

Say this instead: “I don’t know how you do it, but you’re doing a great job!”  It’s not an ego boost as much as it’s simple positive affirmation.  This journey is new for us, and it’s new almost daily: we’re doing our best to get through it without our kids being all jacked up, so a little kindness towards us goes a long way!

5.  Nothing

This one is a toughie because I don’t think it’s something that’s done intentionally.  I’ve been on multiple CHD websites and facebook groups, and I often see posts for advice that feature the same wording “Hey heart Mommies” or “Any heart Moms out there know about…”

I know you’re not intentionally leaving out the Dads, but unfortunately it’s there and for awhile I would answer these posts with “Heart Dad here…” because I wanted to show that, hey…we know stuff too.  There are people out there who write “Hey heart families”…and kudos to them.  Again, I’m not saying you’re wrong when you write things to other Heart Moms…it’s important to have those connections too.  But part of why I started my blog was because there really wasn’t a lot out there for Heart Dads: I didn’t see a lot that was honest and humerous and written in a way that I could relate with.  And you know what I’ve discovered?  There’s A LOT of Dads out there who are looking for the chance to have a voice too; they’re looking for the chance to be connected and have a seat at the table.  We don’t want to be portrayed as the dudes in the background who help out every now and then…we want to be a major player, and we can be!  Sometimes you just have to remember to leave room for us at the table.  I appreciate every Heart Mom out there for giving birth to our Warriors, for being nurturing and kind and for keeping us all going without running into traffic.  Heart Dads: you’re important too, and we’re all in this together.

Say this instead: “What do you think?”

BlogHeadshotChris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.

 

Be The Forest

One of the founding principles of the Pediatric Congenital Heart Association is collaboration.  We recognize that it takes a strong network of people to succeed, whether it is advocating, educating, or simply just making it through the day.  As Chris describes, we all need to be part of the forest.

ShakingHands

I’ve said it once and I’ll say it again: Heart Parents are strong.  There’s something about the combination of worry, knowledge, lack of sleep, and ungodly amounts of caffeine that make us nearly superhuman.  There’s no one tougher than us and our kids, right?  I like to compare our kind to the mighty Redwood tree.  You look at them and are amazed at how big they are and how strong they look…they’re a marvel of nature.

Despite our ability to kick into beast-mode nearly at will, there are in fact times where we stumble and fall.  We get stressed out, we burn out, the hospital bills arrive, the van breaks down, your kid threw up his entire feed…AGAIN.  Sigh.  And suddenly we go from Redwood to dandelion, just ready to blow away at the next little thing.  You ever get this feeling?  Or is it just me?

ALittleHelp

Here’s an amazing fact: I read somewhere recently that while Redwoods are absolutely gigantic and look so very strong, they actually have a very shallow root system.  That seems absolutely insane, considering how huge those trees are, but it’s true.  The powerful thing I learned from this is that while Redwood roots are shallow, they extend outward to support one another.  This keeps them from starving, this keeps them from blowing over in the winds and storms…each other.

Please realize, Heart Moms and Dads, that despite how alone and frustrated you might feel on any given day, you’re not alone.  Not at all.  Reach out and find someone to talk to, someone to hear your gripes, someone who will support you because they’ve been there.  Look into your local community for heart families to connect with.  Use social media: there’s tons of groups out there too.  You’ll quickly find there are people out there just like you, no matter how messed up you may feel.

And when you’re on top of your game and feel like you’re rolling along, then you should reach out and help someone else.  There is an estimated 2-3 MILLION people living with a CHD…and their parents add to that number.  Think about what difference we could make if all of us reached out to help one fellow CHD parent.  Think about it.  Use what you’ve lived to help someone see the sunshine…and when you’re in that dark place – and you will be – someone will be there to help you.  A fellow guest blogger here with PCHA put it perfectly: this is a marathon, not a sprint.  I will say that during this marathon ALL of us will stumble, and when that happens will you be the one to stop and lend a hand?  Will you find yourself without a hand to hold?  I hope not.

For some of you this is very challenging: it requires you to reach out of your comfort zone and maybe rip open some old wounds.  When you do that, though, you will help others heal.  For some of you, the help starts with you.  You know how the saying goes, you should love your neighbor as you love yourself…but I’m willing to bet there’s some of you out there that I don’t exactly want loving me based upon how you love yourself.  Ouch, I know.  But it’s true and you know it.  You’re doing a great job, Heart Mom and Dad.  Keep it up and keep running…keep your hands outstretched to help others.

Let’s be that mighty Redwood forest together…because it’s more than one tree, it’s all of them working as a team to support one another and survive.  Do you want to see more CHD research?  Advocate for it together.  Do you want to give the best care to your heart warrior? Work together.  Do you wish to one day see the end of CHDs?  Fight for it together.

There’s an African proverb that sums it up best: “If you wish to go fast, go alone.  If you wish to go far, go together.”

Be the forest.

Redwoods

BlogHeadshotChris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.

 

“I am Conquering CHD.” You can, too!!

1000 advocates

1000 advocates in 30 days.

We can do this!

Help us “Conquer CHD”

Click here to become a member of PCHA’s advocate network, today!

Why?

We need you.  Advocacy works.  It has increased federal research funding. It has helped expand CHD data collection to include people of all ages. It has raised the transparency discussion to a national policy level.  It has increased awareness of CHD in Washington D.C.  Advocacy works.

In order to have a bigger impact, we need everyone to come together with one voice!

Your experience with CHD is a powerful tool.  The key to success in bringing about change on a local or national level is to provide a personal connection to an issue. For this reason, through our grassroots efforts, PCHA is bringing the community together to share their stories and strengthen the voice of CHD.

Our advocates are the most effective resource for making changes on Capitol Hill, with government agencies, other national policy makers and even with-in their own hospitals.

Being a part of the Advocacy Network is easy.  Being part of something bigger makes a difference!

It’s Free!  You are under no obligation to do anything.

As an advocate you will benefit from:

  • regular communication to help you stay up to date on what is happening in the CHD policy world
  • access to resources to help empower you to share your story
  • alerts to when urgent action is needed
  • personalized opportunities depending on local and regional needs

By signing-up, you are joining a community of patients, parents, families, friends, nurses and doctors all committed to conquering CHD. Be a part of something bigger. And tell the world “I am Conquering CHD!”

Please sign-up today and use and share these badges to help us reach others.  Let the world know that you are doing your part – you are Conquering CHD!

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