A Day in Little Rock

Traffic

The perspective was daunting.

There, in the cafeteria of Arkansas Children’s Hospital, behind tinted windows, gazing out over I630 I counted the endless number of cars that passed and wondered, “Do any of these drivers know what’s going on in here?”

With my well earned cafeteria bucks (earned from endless hours in the NICU pumping station), I took my breaks and ate and weeped and pondered the future of my newborn son, and cursed the passing drivers for not having anything more pressing to accomplish other than getting home.

At 5 weeks of age my baby boy was in a hospital bed in the CVICU, two floors above me, with his chest cracked open.  After successful open heart surgery to correct a congenital heart defect, his immediate post operative recovery did not go as planned.  My husband and I had ventured out of the ACH “biosphere” for the first time in three days, and were sitting in a booth at La Hacienda savoring a plate of refried beans and enchiladas, when we were texted to return immediately with nothing more than, “something is wrong.”

Upon arrival at the doors of the CVICU we were met by an Intensivist, who kept us out of the now Code Blue CVICU.  With an entire squadron of medical professional surrounding his bed, my only vision was of his cardiologist standing above him performing some kind of life saving intervention.  Numbly I asked, “Is he going to die?”  “I don’t think so…” was his reply.  How comforting.

In the hours that followed we were advised of his condition with words like, “unexpected”, “abnormal heart beat” “worst case scenario” “ECMO” “heart transplant.”  None of which had been uttered to us prior to surgery.  The most serious outcome from his repair, we were told, was the now mandatory use of antibiotics prior to any future dental work.  Funny to think that his teeth were to be our biggest worry.

As dusk gathered around the hospital, hours after his surgery, my husband and I were forced to make the decision – do we stay the night? Or go home to our other two young children?  A gentle-hearted Attending “talked us off the cliff” by advising us to “go home, hug your kids, and get some rest.”

After a restless night, pumping every three hours to manage my milk supply, with many phone calls to check on “Warrior” (our appropriately chosen code name), dawn broke, and he was still alive.  The drive back to the hospital was agitated.  What would we encounter when we crossed the threshold?   As we cautiously approached the doors we were met by a guardian angel, I mean a nurse who said, “I think we’ve turned a corner.”  Words that, should I ever get a tattoo, would be prominently etched on my skin.

In the days and weeks that followed, as I sat, watched, and waited, for monitors, tubes, and lines to be removed, I marveled at the compassion and competency of those who cared for my son.  Gratitude outpouring from a simple mom who had entrusted his care to so many whom I had never met.

In the years since his surgery, we celebrate his life by eating dinner at the ACH cafeteria on the anniversary of his surgical date.   Our normal dining spot is by those same tinted windows, where I still wonder why everyone is in such a hurry, and if any of the drivers, as they zoom by this grand temple dedicated to care and healing, ever stops to think of the thousands of lives behind the façade, families like ours who have a story.

The next time you are driving down the highway – take a look, a brief look, and say a prayer that you are on your way home.
© Jacob Slaton PhotographyMelissa McCurdy is a mother of 3; wife of 1; daughter, sister, friend, aunt; lover of football, politics, food, travel, walking, theatre and all things literary. She’s without talent in most normal Mormon activities – she doesn’t paint, sew, craft, scrapbook or quilt. She shelves and reads books and for a living, and could spend hours staring at bookshelves. Her youngest was born with a congenital heart defect and had open heart surgery at 5 weeks. She knows more about Children’s Hospitals than she ever wanted too. One of the highlights of her life was attending the first inauguration of President Barack Obama, primarily because she had better seats than Oprah.  And when she grows up, she wants to be the first female commissioner of the NFL.

 

Inside Out

Today’s guest post comes from Stephanie who shares how her priorities have changed since the birth of her daughter with a heart defect.

 

SweetAngelMaggie (1)

I used to really care about elections and politics.  As a political fundraiser, I took it personally if friends or even strangers supported my opponent.  Funny thing is, they were never MY opponent, they were the person running against the person who paid me to help them raise enough money to compete and hopefully win an election.  I jumped from campaign to campaign, always eager to fight and argue and sometimes sacrifice relationships with friends and family members.  Nothing was more important than my job, my reputation and the campaign I happened to be working on.

I worked for a sitting governor during my entire pregnancy in 2011.  I sat in an attic office, talking and complaining and making sure that everything I touched went well.  I raised a lot of money and watched my feet and ankles swell as I paced around at fundraising events.  I took pictures of my “kankles” afterward.

Our daughter was born on January 11, 2012; she was pink and screaming with a shock of dark hair.  I did not enjoy pregnancy one bit so I was so relieved she was here and I could eat a big dinner.

During the first exam, after the first bath, probably while I was begging for a dinner menu, the nurse said, “She has a heart murmur….But lots of babies do and usually it’s nothing, most close on their own.  No big deal.  The pediatrician will listen and I am sure it will all be fine.”  I shrugged and said OK, never once thinking there was anything wrong.  Her heartbeat had been so strong the whole time I was pregnant and I had such a tough nine months – I was sure nothing was wrong.

The next day, the pediatrician examined Maggie and commented that her murmur was a “3 on a 1 to 6 scale.”  He ordered an echo, just to figure out what was going on.  I will never forget my mom piping up from across the room, “Her sister had Tetralogy of Fallot!”

Tetralogy of Fallot sounds like gibberish if you’ve never heard it.

I never knew my sister’s defect had a name.

I thought she just had a hole in her heart that they fixed.

The doctor paused upon hearing my mom’s comment and I don’t really remember much other than taking a shower and talking to my sister about child birth while the techs did an echo on my baby, down the hall.  My husband and mom walked with her, I wasn’t overly interested because I just knew nothing was wrong.  I walked over and looked in the window while they did it but I just couldn’t bring myself to get upset.

Later that afternoon, around 5:15 or so, my husband and I were in our room with our new baby.  For some reason she and I were skin to skin, maybe we had just finished nursing, when the pediatrician came in the room.

I only remember him walking in and around to the bed where we were sitting.

I do not remember what he said but as he said it, I felt my soul turn inside out.  There is no other way to describe it.

I have never been the same.

The love I feel for my child is beyond comprehension.  I have been more scared than any parent should ever have to be.  I felt something deep inside me rip open.

I have never been the same.

Now, 28 months later, Maggie has had 2 heart surgeries and is functioning normally.  You would never, ever know she had heart issues.  She goes to Montessori school, jumps and runs everywhere and loves her Daddy.  She loves me too, but it’s a different kind of love.

I am back working in politics but I don’t care the way I used to.  I care about Maggie and my husband and our family but that’s about it.  I care about helping other heart baby families know they are not alone and I have such deep empathy for parents of children with any kind of issue.

Politics is fun but I am just so blessed and thankful that my baby is OK.  I am not the same as before Maggie’s diagnosis and I think that’s a good thing.

 

Stephanie Dorko Austin began her career working for former White House Chief of Staff Erskine Bowles both times he ran for U.S. Senate (2002 and 2004).  She was Finance Director for State Treasurer Richard Moore’s gubernatorial campaign in 2008, helping to raise just over $5M for the primary election.   During the 2010 cycle, she worked for U.S. Senate candidate Cal Cunningham and N.C. Senate Majority Leader Martin Nesbitt.  She was Deputy Finance Director for Governor Bev Perdue’s re-election campaign in 2011.  She has also worked as a fundraiser for State Treasurer Janet Cowell and U.S. Senator Chris Dodd of Connecticut.

Stephanie’s non-profit experience includes serving as Vice President of Government Affairs for the Charlotte Chamber of Commerce and Development Director at the Council for Entrepreneurial Development and the NC Advocates for Justice.  

She currently works for the Cooper for North Carolina Committee and serves on the Board of Advisors of the Jamie Kirk Hahn Foundation and the Board of Trustees of Follow the Child Montessori School.  A Phi Beta Kappa graduate of Trinity College in Washington, DC, Stephanie and her husband, Will, live in Raleigh, NC.

50 States, 50 Stories Campaign

50 Stories 50 States

6/23/14 Update:  We now have ONLY 9 STATES LEFT!!!

We are still seeking stories from: Delaware, Hawaii, Maine, Montana, Nevada, Oregon, Utah, Vermont and Wyoming.

 

50 Stories 50 States

Share your story, now!
The Challenge is on!!

We are uniting our voices to fight for more data, more research and better transparency of quality information in order to Conquer Congenital Heart Disease.

The goal: to send every single Senator a personal story about CHD, along with information highlighting our serious concerns about data, research and quality.

In order to do this, we have launched the 50 States, 50 Stories Campaign. By August 1st, we need stories from all 50 states.  More than one story from a state?  No problem, we’ll use them all in one way or another!

Share your story, now!

We need you:

You’ve told your story to friends and family.  Perhaps you’ve even told your story on FB.  It can be very intimidating to share your story on a larger platform.  But, think of the huge difference it will make. Share your story on our website: Simply click here! We will do the rest.  We will contact you to let you know that we got your story and talk about different ways we can use the story.  We will edit the story and send it along to your lawmakers.  You will have input every step of the way. Add as much or as little identifying information as you would like.  Some people like to use their first and last name, others just a first name.  Some like to include pictures, others do not.  Do whatever you feel most comfortable with.

Share your story and make a difference today!!

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.

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!

Congenital Heart Awareness – Saving lives in Iraq

Today’s guest post comes to us from half-way around the world.  Preemptive Love Coalition is a team of champions who live and work in Iraq, striving to eradicate the backlog of Iraqi children waiting in line for lifesaving heart surgery in pursuit of peace between to communities at odds. 

Preemtive love Echo-meeting-Danar-5

1 in 10.

That’s how many children are now reportedly born with a heart defect in some Iraqi cities.

Combine this high CHD rate with Iraq’s near total lack of pediatric cardiac surgical teams, and you’ve got a backlog of thousands of families who are stuck.

Thousands of families. No doctors. No options.

Preemptive Love Coalition exists to provide lifesaving surgeries for these children in pursuit of peace. Our team lives in Iraq, moving and working among the families we seek to serve.

By hosting lifesaving “Remedy Missions” inside the country we’re able to train the local doctors and nurses while saving lives. Each mission creates more CHD survivors, more parents who can rest at ease and more communities that can celebrate a hopeless situation made right.

And for many in the Coalition, CHD is a very personal issue. Either they lived through it or a loved one did, and their stories encourage us. They remind us that this problem in Iraq—something we’ve dubbed The Backlog—can be beaten!

This month, we are inviting you, CHD survivors around the world, to share what you’ve been through—we want to celebrate your survival!

To do that, we’re offering a free copy of our book to anyone who has ever had a heart defect. If you have a heart defect, simply email us your address or leave a comment below and we’ll mail you a copy. If you know someone else who has one, forward this post to them and we’d love to send them a book, too.

We’ve spent years celebrating lives saved here in Iraq—now let us celebrate lives saved where you live!

preemtive love logo

Matthew Willingham works as the Communication Director for Preemptive Love Coalition, an Iraqi-based development organization providing lifesaving heart surgeries for Iraqi children in pursuit of peace. Read Preemptive Love’s on-the-ground stories on Twitter and Facebook, or grab a free copy of their new book here.

CHD Awareness Week – Do Something.

This is a busy time of year for those of us in the Congenital Heart Disease Community.  It is Heart Month.  Today is Go Red Day.  It is also the first day of CHD Awareness Week.

Spreading awareness about the most common birth defect is the critical first step in Conquering CHD.  By spreading awareness, we can educate others about this growing public health burden that is devastating to families across the country.  The blog this week will feature posts from Preemptive Love, the CDC and more, as we work with our partners to help spread awareness in our communities, in Washington D.C. and around the world!

However, I strongly believe that awareness is only impactful when it is paired with education and leads to action. During the frenzy of awareness activities this month, we are encouraging the community to share our message: Be Aware. Learn More. Do Something.
Be Aware

 “I alone cannot change the world, but I can cast a stone across the waters that create many ripples.” – Mother Theresa

Here are a few ideas about what you can do:

1) Be a part of something bigger.

Become a partner of PCHA.  Join the rapidly growing movement that is making a difference.
There is no obligation on your part.  By signing up to receive our emails, you will get an inside look at PCHA.  You will get advanced notice of opportunities to volunteer, advocate and influence.
Sign up today!

2) Use your influence, right away!

Whether you realize it or not, you have a circle of people around you that listen to what you say.  Encourage them to join the movement, too.  Encourage them to sign up, too.  The more people united in messaging and action, the greater impact we can have! 

3) Volunteer.

Your time and talents are very valuable to PCHA.  Our volunteer needs change regularly, but we will try to involve you in any way that we can.  If you are interested in volunteering, please email volunteer@conqueringchd.org.  Include how much time you are able to commit on an average monthly basis and what ways you think you’d like to help.

4) Advocate.

Use your story to make a difference.  We will be asking you to email, call or visit decision makers.  Whether it is a doctor or lawmaker, your story is powerful and can move someone into action!  Click here for our most recent alert to say Thank You to your lawmakers.

5) Donate.
Your story is powerful.  Your dollar is powerful, too.  In order for PCHA to be successful, we need to fund our projects.  Give what you can, every dollar counts.  Give for someone you love, give for yourself, give to help the thousands of people dealing with CHD that will, in turn, benefit from the education, research and advocacy support we provide.
Donate Today!

Even more new things…

I thought launching accounts in Facebook,TwitterLinkedIn, and Instagram was quite an accomplishment for PCHA. 

But wait – there’s more! 

Official Newsletter

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PCHA just sent out its first official newsletter.  Don’t miss out on any behind the scenes information, updates on our latest projects, and opportunities to volunteer or advocate.  Click here to find our rudimentary sign-up form on Facebook, while we patiently wait for our website.

Now accepting online donations!

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We couldn’t make all of this happen without your generous support. PCHA is primarily funded by individual donations – by you.

We are grateful to those of you who were founding donors, helping us get our feet off the ground in 2013!

In order to reach our goals we need your help.  Please consider donating to support our educational programming like Smart Patients, research partnerships with groups like the CDC, and advocacy efforts to bring continued success in Washington.

Simply click the donate sign – it’s safe, quick and easy!

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Thank you for helping us to help you!

 

PCHA goes social…

Well, after a week of trial, error and lots and lots of learning… 

The Pediatric Congenital Heart Association is now social.  

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Find us on FacebookTwitter,LinkedIn, and Instagram.
Don’t forget about our website!

Facebook:

Pediatric Congenital Heart Association

Find us, like us, share us.  Share with us – tell us what you’ve been up to, why CHD education, advocacy or research matters to you.

(There will be a share your story feature on our website, too!)

 

Twitter:

PCHA_CHD

Find us, follow us! Tweet away, my friend.  Some hashtags to consider: #CHD, #1in100, #1in33, #CHDAware, #CHDAdvocacy, #Conqueringchd

 

LinkedIn:

Pediatric Congenital Heart Association

Find us, follow us! See what some of our organizational partners are up to, as well!

 

Instagram:

pcha_chd

Find us, follow us! See what we are up to, in pictures!  Join our photo campaigns throughout the year.  Tag us in your CHD related efforts.  Some hashtags to consider: #CHD, #1in100, #1in33, #CHDAware, #CHDAdvocacy, #Conqueringchd