Telling your story: healing, inspiring

Stories bring healing:

I was talking with someone yesterday how Facebook is such a great opportunity for people to connect with each other and talk about CHD.  One of my favorite parts about these groups are when someone introduces themselves, briefly shares about their child and sometimes includes a picture.  It opens the door for a bit of vulnerability and a whole lot of healing.

One mom posted this quote, and I couldn’t agree more:

story quote 1

 

Stories also bring meaningful change:

There is an urgent need in the CHD community.  A need for more data, more research, and quality standards.  Here at PCHA, these are our top priorities.  But, we can only do so much on our own.  We need you.  We need you to tell your story.

Your story is a very powerful tool.  It is easy for lawmakers and doctors to get caught up in the numbers or ignore them all together.  We need to work together and put a face to these problems.

Sharing your story is safe and easy.

We’ll do the hard work.  Share your story here.  That’s it. We’ll contact you to talk more about how we can use this story.  We can post it on our blog to inspire others.  We can include it when we connect with lawmakers in your state.  We won’t do anything without your permission first.

50 Stories in 50 States

Can you imagine the impact we could have if we could send every single Senator a personal story about CHD?  In order to do this, we have launched the 50 States, 50 Stories Campaign.  By August 1st, we hope to have collected stories from all 50 states.  More than one story from a state?  No problem, we’ll use them all, one way or another!!! Read more…

Share your story, today!

50 Stories 50 States

Rain Showers, Rainbows

kieran in the rain

Today’s guest post is from Margaret, mom to Kieran, where she describes her struggle to overcome the conflict between reality and her spiritual faith.  PCHA does not endorse any specific faith or religion.  Whatever your beliefs may be, hopefully you can relate to the resolution this mother finds in appreciating the hope and comfort she finds in her faith.

It was an April Monday, the day after Easter.

My son pulled on his red rubber rain boots and raced to the door.

“Mom, can I have the colorful umbrella?’” he asked me excitedly.

Even though it was still raining outside, we put our umbrellas up and went for a spring walk. At 5 ½ years old, there’s little my son likes to do better than take a walk in the rain as if he’s a born romantic, a natural Paris-in-the-rain type of guy. He carries an umbrella only because I require it–otherwise he loves getting soaked to the bone. I can picture him in London, getting drenched but saying, “just a drizzle!” As I watched Kieran hopping through puddles and saving worms from the well-trafficked driveway to our building, his rainbow-colored umbrella twirling against the darkened sky, my thoughts rewound back through time to an Easter 6 years ago now, when my husband and I had just found out our son was going to be born with HLHS. I won’t recap that story here, but you can read more about HLHS and our first years here.

A lot has changed since the difficult Easter weekend of 6 years ago, when my husband and I got the news at the end of the day on Good Friday, and spent a scared weekend trying to learn about a diagnosis we never even knew existed until the day before–and our baby had it. Church that Sunday was difficult and traumatic for me, and in hindsight, I probably shouldn’t have gone–instead of finding comfort in the message of resurrection and renewal, all I could fixate on were the frightening parts about a man who was said to have been born to die and his grieving mother. I was so stuck in my own shock, hurt, and terror that the promises of my faith and family and friends were all but lost on me. I had yet to believe that “God isn’t in the event, but in the response, in the care and love one receives.”

In retrospect, change is always happening when we experience new life events, even if we don’t notice the tectonic shifts beneath our feet at the time. Sometimes only looking back allows us to see how fleeting those times in life really were. I believe we, as humans, associate the ephemeral with beauty and innocence, and that is what allows us to appreciate the brief blaze of fall colors, the fleeting bloom of early spring flowers, the graceful visit of a hummingbird at our window, the short but blessed lives of butterflies, and the exuberance of early childhood. We associate a burst of joy and energy with such things because we assume such a finite timespan inspires–even requires–an enjoyment of life to the fullest.

There are many possible happy endings to any story. The happy ending I deeply wish for is that a cure for HLHS and all other congenital heart defects would magically appear and our children would be promised long, healthy lives free of such formidable conditions. But as time went on, I realized that isn’t the only possible happy outcome of this story.

My son teaches me to appreciate not just the rainbows in life, but the rain showers. And isn’t one born from the other, anyway? I don’t like getting wet; he sees joy and play in a rainy afternoon. Kieran reminds me that from hard times, change occurs and new life is born. He reminds me to treasure the fleeting moments, the ephemeral beauty of his childhood, and to notice the temporary joys given to each one of us on this earth. When I have moments of fear, worry, even terror, I remind myself to focus on enjoying the time we have together to the fullest.

Now, finally, Easter holds wonderful meaning for me again. Instead of being blinded by hurt and trauma, I can hold most close and dear the wonderful promises of comfort, of renewal, and of the eternal significance one person’s life can be, no matter how fleeting our time spent here is.

Margaret King bioMargaret King is a stay at home mom who loves spending time with her family, avidly reading, community gardening, traveling, and exploring the outdoors.  She is currently working on a young adult fiction series and enjoys flash fiction and science fiction writing as well.  Margaret has worked in the past teaching English abroad in Nepal and Mongolia, which she counts among the best experiences of her life, along with her heart family journey which she is so happy to share with our readers. Read more about Kieran’s story, here.

Advocates in Action

We recently sent out an Action Alert, asking you, our incredible advocates, to contact your legislators to request increased research funding.

Many of you sprung into action.  Here are a few cute snip-its:

1) Say Cheese!

Atkinson girls with DeLauro's Office

Mirabel, her twin sister and her mom, stopped by Capital Hill to visit Congresswoman DeLauro’s amazing staff person, Eric Anthony.  Thanks Meredith!

2) Did I just hear you correctly?

Another rockstar advocate from Arkansas was simply trying to get an email address.

Melissa: (talking to receptionist in Sen Mark Pryor’s DC Office) Does the Health Care LA prefer mailed correspondence or email?
Staffer: Email — it’s much quicker and he can respond to you.
Melissa: May I have his email address, please?
Staffer: No — we don’t give those out.

Thankfully, Melissa knew the solution.  She simply asked for the correct spelling of the first and last name for the Health Care LA, to insert into the standardized email format (first_last@senator’slastname.senate.gov)  Thanks Melissa!

It’s not too late to join in on the fun!  For instructions and a sample template to email your legislators using their online form, click here.  If you are feeling more adventuresome, email advocacy@conqueringchd.org and we can talk about how to send an email with an attachment, like Melissa, or how to visit your local or D.C. legislative office, like Meredith.

CHD Symposium, June 21

The Children’s Heart Foundation, Mended Little Hearts and the Pediatric Congenital Heart Association have joined together to host a National Congenital Heart Defect Symposium. Join us to hear firsthand updates from renowned speakers in congenital heart defect (CHD) treatment and about issues that affect children living with CHDs, including clinical updates, neurodevelopmental issues, exercise, and transitioning to adult CHD care. Get inspired by others and find out what you can do to be a champion for change. 

 
Where: Westin Indianapolis 

When: June 21, 2014

Time: 10:00 a.m. to 5:00 p.m.

Cost:  $35 per person includes materials and lunch.

View the Symposium Flyer here
Check out the exciting list of topics and speakers!

We have negotiated room rates for the Westin Hotel at $119 Single/Double occupancy; $129 Triple occupancy; $139 Quadruple occupancy; plus the current rate of 17% for state and local taxes.  Guest room rates are also available three days pre and post the official event dates, based on availability.
Reservations must be made by May 18, 2014 to secure the MHI room rate.  To make a reservation, please call the hotel at (317) 262-8100.
To get these rates mention “Mended Hearts” when making reservations.

Register here

Questions:  Contact Jodi Lemacks at jodi.lemacks@mendedlittlehearts.org or 804-419-7028

 

Thank You Volunteers!

Recognizing Volunteer Appreciation Week, April 6-12, 2014

It’s time to do some appreciating!!!  Thank you to the more than 100 volunteers who have stepped up to partner with PCHA.  Together, we are doing great things.

Grandfather and granddaughter holding hands

Last night, my son asked if we could “pay it forward” and buy the meal for the person behind us in the drive-thru.  The conversation eventually led to volunteering our time as a means to pay it forward.

I realized, then, how easy it is to apply the “pay it forward” principle to the CHD community.  As patients and family members, we have been through a lot.  But, most of us can recall a bright spot here or there.  Usually because some thoughtful person helped us out or did something nice in some way.  For me, it was a bag of Hershey’s Kisses quietly left on the doorstep by a friend.  It is these moments that make me want to pay it forward, to give back.

There are many ways to do that.  Some people donate money.  Others donate time.  Both are equally valuable to the success of the Pediatric Congenital Heart Association

When I asked my son what he thought it meant to volunteer, he described people who give up hours, days, even months of their lives to help others.  I would call those power house volunteers.

We have a few of those powerhouse volunteers who have given countless hours of their time to ensure the success of PCHA.

A resounding THANK YOU to:
David Kasnic – Chairman of the Board
Michelle Gurvitz – Medical Advisor
Gretchen Whitehurst – Education Committee Chair
Sara Schuh – Public Policy Committee Chair
Meredith Atkinson – Advocate Extraordinaire

Want to be a volunteer but just don’t feel you have the time?

There is GOOD NEWS!

Volunteering comes in all shapes and sizes.  There are volunteering opportunities that take just seconds! Sometimes it is the little things that matter most. When we each do our small part, it adds up to something big!

Here are a few ways you can pay it forward and volunteer for PCHA:

2-3 Seconds: Social Media – we are always looking for social media volunteers.  The easiest thing is to volunteer a few seconds each day to Like, comment, share and retweet our posts.  Doing so is a great way to spread awareness.

5 minutes: Advocate – we currently have a letter writing campaign and we need advocates to send an email to their legislators.  To send a quick email, get instructions here.

A few hours: Blog – We are currently looking for people who would be interested in sharing a little bit about their experience as a guest blogger. If you are interested let us know!

A few more hours: Leadership – PCHA has a couple of volunteer leadership openings.  These positions require an application and a little bit more in-depth orientation process, but if you are interested let us know!

And, of course, we need to thank those who give of their money, too! Thank you to our incredible donors who ensure our success through their generous financial support.

“Volunteers do not necessarily have the time; they just have the heart.” – Elizabeth Andrew

Thank you to all of you who give!

Action Alert – Support Congenital Heart Disease Research Funding

Email your legislators:

FUNDING CDC DATA COLLECTION

 

Action Needed

Email your lawmakers and ask them to provide $7M to fund CDC surveillance efforts.

  1. Visit your lawmaker’s website where you will find a contact us form.  You can find their website at www.house.gov or www.senate.gov
  2. Using the suggested talking points and your own personal information, edit the letter below and paste it into the online form.
  3. Let us know you took action and complete the I did it! form on our website.

Suggested Talking Points:

  • CDC funding has already been authorized to help better understand the congenital heart disease population
  • Currently, $2.9M has been appropriated, and CDC is funding 3 pilot adolescent and adult surveillance projects.
  • Additional funding is needed to continue and expand these efforts across the life span, including pediatric populations.

Email template:

Dear Senator/Congressman [Fill in name here],

I am writing to ask you to include $7M in funding for the Centers for Disease Control and Prevention to adequately support congenital heart defect surveillance across the lifespan, in your FY2015 request.

[Using 4-6 sentences, tell your story here and why research is important to you.]

As the most common birth defect, resulting in costly life-long care, congenital heart disease remains a serious public health burden and must be made a priority.

If you would like any additional information or sample report language, please contact advocacy@conqueringchd.org.  

Thank you,

[Your Name, Your city/state]

To learn more about the PCHA advocacy program, watch this video, or visit our website.

Webinar: Awareness, Knowledge, Action – Congenital Heart Disease Advocacy

Awareness, Knowledge, Action:

Why you should care about advocacy, and what you can do!

Watch the Webinar today!!!

This introductory look into advocacy provides quick and easy ways to get started.

We are encouraging everyone to learn how to get involved and be a part of something bigger!

By watching this video, you will:
  • Learn why it is important to move beyond awareness to knowledge and advocacy.
  • Get up to date information about PCHA’s advocacy priorities
  • Learn about our Share your Story and 1 Voice/40,000 Strong Campaigns
  • Find out more about how you can get involved and make a difference.

Congenital Heart Awareness – from our Partners at the CDC

Today’s guest post comes to us from the Centers for Disease Control and Prevention (CDC).  With-in the CDC, the National Center for Birth Defects and Developmental Disabilities (NCBDDD) is dedicated to helping people live to the fullest. They have been incredible champions for congenital heart defects and we are privileged to have them as a partner! This post is the first of 2 from the NCBDDD to celebrate national efforts to raise awareness of congenital heart defects. 

Isabella2

Meet Isabella. She represents 1 in every 100 babies born in the United States each year. Her parents first found out that she had a heart defect at 19 weeks of pregnancy. Remembering back to that day, her mother says, “the ultrasound tech hovered over her heart during the ultrasound, and our excitement quickly came to a halt. Our fear was confirmed a few moments later by our OB-GYN, and it felt as if our world was crashing down. Our daughter had a heart defect. Our family had no history of heart defects. Why was this happening to us?”

We at CDC are committed to finding the answers to these types of questions. These common conditions not only impact the individuals living with a heart defect, but also their families and communities.  Congenital heart defects are an important public health issue and CDC works to learn more about these conditions and improve the health of those living with them. We do this through public health tracking and research.

To track congenital heart defects, CDC has established state-based tracking systems. Information obtained from these systems help us understand if the number of people affected is increasing or decreasing over time and help us learn if these conditions are affecting certain groups of people. Tracking systems also help states plan for services for affected individuals and help ensure that babies and children receive needed care and services.

As medical care and treatments have advanced, people living with a heart defect are living longer, healthier lives. In fact, there likely are about 2 million children and adults in the United States living with a congenital heart defect. CDC recently launched a promising new program to monitor congenital heart defects among adolescents and adults in 3 sites (Georgia, Massachusetts, and New York) to understand health issues and needs across the lifespan that can help improve the lives of individuals born with these conditions.

We use the data we collect to learn more about what might increase or decrease the risk for heart defects as well as community or environmental concerns that need more study. CDC funds the Centers for Birth Defects Research and Prevention, which collaborate on two large studies of birth defects: the National Birth Defects Prevention Study (1997-2011)  and the Birth Defects Study to Evaluate Pregnancy Exposures (which began in 2014). These studies work to identify risk factors for birth defects, including heart defects, in hopes of identifying prevention opportunities.

Each February, CDC joins families and partners to recognize Congenital Heart Defect Awareness Week. We look beyond the numbers and remember the individuals, like Isabella, affected by these conditions. After multiple procedures and open heart surgery, Isabella is almost 2 years old, a typical toddler with lots of spunk and personality. She loves playing outside with her older brother and playing with her many baby dolls, including listening to their “heart.” Her family would like other parents facing this unknown world of heart defects to know that there is hope. They encourage others to “Help spread the word about heart defects and how amazing these kids are! Our daughter, Isabella, is very special and inspires us daily!” Together with states, academic centers, healthcare providers, and other partners, CDC works towards a day when all babies are born with the best health possible and every child thrives.

moore_200bWritten By: Cynthia A. Moore, M.D., Ph.D. Director
Division of Birth Defects and Developmental Disabilities
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

5 Myths About Telling Your Story

Your story can be a very useful tool when working with others to make a difference.

Move past the myths and share your story on our website!

1) No one wants to hear my personal story.

covering ears

What you tell your friends is one thing.  But, it’s different when you are telling your story to a person with the power to make a change. Whether it’s a lawmaker, a physician, researcher, or insurer, they need to hear your story.  You see, all the numbers in the world are not nearly as powerful as your personal story, your experience.

2) You have to be a social person to tell your story.

pwhisperhappy

There are lots of ways to tell your story that don’t even involve talking!  Start by getting your story in writing.

There is no one exact way to do it. After nine years of rewriting my story, I now have a short version, a long version, a funny version, and tucked inside for special occasions, I have that very emotional version that still takes my breath away.

Once you have your story down on paper – submit it to our website!  We are building a collection of stories to help inspire others and we look forward to adding yours.

3) Telling your story takes a lot of time.

alarm_clock

It might the first few times.  It took me several hours to get my thoughts on paper, several days until I was finally happy with it, and it has changed many times over the years.  Now, I can write it in a quick email or share it in a passing conversation.  I’ve even hammered out a 30 second version I can tell someone on the elevator!

4) You have to be a heart defect expert for anyone to listen.

expert

You are the expert – you, or someone you love, has been impacted by heart defects and you know more about your experience than anyone else.  You don’t need to know the medical details or the latest research.  It is your story that matters.

5) Telling your story doesn’t make a difference.

mosquito

Oh, yes, it does.  I have heard countless times how someone’s story has changed minds, tipped the scales, and moved mountains.  Mine has, and yours can, too. Try it and see what happens.

The Pediatric Congenital Heart Association firmly believes in the power of our stories and is committed to bringing them together to be the resounding voice of the CHD Community.

We are building a collection of stories that can be found on our website.  A few stories will be featured on our home page.  Others can be found using the links on our blog page. These stories can be used to inspire others to take action, too.  Be a part of something bigger – share your story today, because together, we will make a difference.

 Amy Basken – President, Pediatric Congenital Heart Association

 

Understanding and Treating Heart Defects – National Institutes of Health

Today’s guest post comes to us from the National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health. The NHLBI oversees several large research programs focused on heart disease in children and funds scientists at hospitals and universities throughout the United States who research the causes and problems associated with congenital heart disease.  Research promotion is one of the founding priorities of the Pediatric Congenital Heart Association.  We would like to introduce you to some of NHLBI’s research efforts.

Every 15 minutes, a child in the United States is born with a congenital heart defect, the most common lethal birth defect. Today, thanks to screening, sophisticated medical care, and research advances, most of these children not only survive infancy but live to adulthood, resulting in a new set of challenges across the lifespan.

baby smiling

The NHLBI funds clinical research grants to help address these new challenges, as well as research on the causes of congenital heart defects. For example, NHLBI-funded research from the Pediatric Cardiac Genomics Consortium (PCGC) shed new light on causes of congenital heart disease. The results of this study will help shape the direction of future research, and the answers we have now may help change how medicine is practiced. Learn more about the PCGC’s exciting research through a conversation between Dr. Richard Lifton (Yale University), one of the PCGC investigators, and NHLBI Director Dr. Gary H. Gibbons.

NHLBI-funded programs focused on heart disease in children include:

  • The Pediatric Heart Network (PHN), which started in 2001, has completed nine studies focused on improving outcomes and quality of life for children who acquire or are born with a heart condition. To learn more about the PHN, including how to participate in one of our ongoing research studies, please visit our website at www.pediatricheartnetwork.com.
    • The Bench to Bassinet Program (B2B) was launched by the NHLBI in 2009 to learn more about how the heart develops and why children are born with heart problems.  B2B is made up of two research groups: the Pediatric Cardiac Genomics Consortium (PCGC) and the Cardiovascular Development Consortium (CvDC). The PCGC is currently conducting a study called CHD GENES at 10 clinical centers. The study is seeking people of all ages with congenital heart disease to obtain a DNA sample and collect detailed information on how people with congenital heart disease look and act and their medical problems. To learn more about the CHD GENES study, please see our website at www.benchtobassinet.org/CHDGenes.asp.

In addition, the NHLBI is committed to helping parents and children understand the benefits and realities of taking part in clinical research. The Children and Clinical Studies website includes videos of researchers, parents and children sharing their stories about participating in research studies and about what happens during and after a study.

We hope that you will join NHLBI’s efforts to understand and treat congenital heart disease by raising awareness about the importance of research or by participating in a research study.

Kristin M. Burns, M.D.

Burns Formal PhotoKristin is a Medical Officer in the Division of Cardiovascular Sciences at the National Heart, Lung, and Blood Institute of the National Institutes of Health.