Celebrating our 1st Birthday!

In the congenital heart disease community,

we don’t take birthdays for granted.

Join us as we celebrate PCHA’s 1st Birthday!


Learn more about how you can get involved throughout the month of August:


Give a gift!

Tearing open a birthday present is fun.  Giving one brings great joy, too!  Your monetary gift, in celebration of our birthday, is a great way to honor or remember a loved one or friend.

Education, Research and Advocacy are key factors necessary to Conquer CHD.  Your gift supports activities such as:

  • Research Matters – building compassion and engagement in research
  • Quality Project – uniting surgeons, physicians and leaders in quality, working together to empower parents and patients
  • Legislative Conference – Learning and leading by bringing your stories to Washington D.C. to educate lawmakers about federal research

We need your help during our Birthday Month to reach our goal of raising $10,000 to support these important projects.

Birthday donate button 2

Photo Fun! #PCHAbirthday

Help us flood our Instagram Feed – Show us how you celebrate a CHD birthday! Share your picture on Facebook or LinkedIn, tweet it, or post it directly onto Instagram.  Be sure to use the hashtag #PCHAbirthday so we can find it.  We will collect the pictures and share them throughout the month!

blowing out candlesHere’s quick links to our accounts:
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Share a badge:

Birthday Badge

 

Copy, paste and away you go!  Social media will never be the same!


Party Favors for you!
party favors

Update: This opportunity is now over.  Congrats to our winner Diane Kowalik!

Don’t worry, we didn’t forget the party favors.  During our birthday week, August 18-23, you will have the chance to enter and win great prizes from birthday hats to gift baskets.

Make sure to follow us on Facebook and Twitter to learn how to get in on the action!

At the Pediatric Congenital Heart Association we work really hard, but we also know how to Celebrate! Join us!

PCHA-2C-V

Participants Needed: Preparing for your doctor’s appointment

The Pediatric Congenital Heart Association is collaborating with an IT developer working on patient empowerment through different internet applications.

We are currently seeking 10 parents interested in helping us try something new to help parents and caregivers prepare for upcoming pediatrician or cardiology visits.

Interested people must:

    1. Have at least minimal comfort level with social networking, i.e. Facebook.
    2. Have a scheduled appointment with-in the next three months for either the pediatrician or cardiologist.
    3. Be willing to try something new and provide feedback to help us improve the process.

If you are interested, please complete our Registration Form.   Once you have completed the form, you will be contacted in 1-2 weeks regarding your participation.

Thanks,

Amy

We are here… CHD Support

PCHA recently had the privilege of attending the Mended Little Hearts Leadership Training Dinner. The following message was read by National Program Director Jodi Lemacks:

Why Mended Little Hearts Is Here

We are here because after a diagnosis, in your darkest hours, when you have pain in the pit of your stomach and you feel like your heart may break open, there is immeasurable power in having someone take your hand, either virtually or in person, and say, “Hey, you don’t have to walk this journey alone. I will be right here by your side.” And for the first time since you heard those horrible words about your beautiful child’s heart, you have a glimmer of hope, and you think just maybe you can do this.

We are here because when you are sitting in the hospital day after day, hoping that your child survives, and you get a care bag (or our new Bravery Bag) full of items that are perfect for helping you through your hospital stay, you understand that others have walked this path and care about you. You feel comforted, and again, you know you are not alone. You realize that although we can’t give you what you really need, a healthy child without a heart defect, we can give you things to make life just a little easier for you and your family.

We are here because once your child has gone through the initial surgery, heart procedure or hospital stay, you get home and think, “Now what?” You feel scared and confused and have more questions than answers. You wonder if you are doing anything right and if your child is going to be okay. What if you make a mistake? You find that having someone, or even a whole group of people, who continue to support you, to answer questions, to provide information and to connect you with the resources you need gives you confidence and courage so you are better able to care for your child.

We are here because the answer, “Really, I didn’t know that,” to the question, “Did you know that congenital heart defects are the most common birth defect in the U.S.” is simply unacceptable—especially when there is still not a cure for congenital heart defects and our kids need one. We know that many of the answers we do have for our kids—the surgeries and procedures—are temporary, and we live our lives hoping and praying that the technology and/or treatment will come before our kids need them. We know the importance of raising awareness in our communities and nationally. We advocated on issues that affect our kids. And we make a difference—even if it is sometimes just one person at a time. Because we are here, you have confidence that we will keep raising awareness until the there is a cure.

We are here in honor and memory of all of the beautiful children and adults who have lost their battle to congenital heart disease. We work for better quality and new treatment options to say, “This disease will not take any more of our children! We have had enough!” We are game changers who won’t stop until CHD is no more.”

Mostly though, we are here because helping others not only helps them, but it helps us as well. When we are able to take a painful experience and use what we learned to give back to others, we heal. We show the world clearly that although our child has congenital heart disease, it did not defeat us, and it cannot define us. We are stronger than we knew, and our service to others makes the world a better place.

Personally, I am very grateful Mended Little Hearts is here for us when we need it. Thank you all for your time, dedication and service. You all help to improve the lives of families throughout the nation, and while you may not hear from the families you serve often enough, know that what you do makes a difference.

For more information, online support or to find a local group near you, visit mendedlittlehearts.org

Mended Little Hearts is a program of the Mended Hearts Inc., a non-profit, volunteer-based organization providing hope, help and healing to heart patients and their families since 1951.The Mended Little Hearts program works nationally and in communities to support children with congenital heart defects and their families.

Hospital Costs and Resource Use for Children and Adolescents with Congenital Heart Defects

 

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 In a recent study titled ‘Pediatric inpatient hospital resource use for congenital heart defects,’ published in Birth Defects Research Part A, CDC researchers found that in 2009, hospitalized U.S. children and adolescents who had a congenital heart defect had more expensive hospital stays than those who were hospitalized without a congenital heart defect. The most expensive hospital stays were for infants, children, and adolescents with critical congenital heart defects. This information might help improve public health practices and healthcare planning to adequately serve people of all ages with a congenital heart defect.

We invite you to visit here to read a summary of the key findings from this paper, or here to view the article’s abstract. CDC’s National Center on Birth Defects and Developmental Disabilities is committed to identifying the causes of birth defects, finding opportunities to prevent them, and improving the health of those living with birth defects.  Please share this link with your networks.  On behalf of CDC, we thank you for your continued support and your promotion of CDC’s activities related to birth defects.

Wabi-Sabi: The beauty of our scars

Wabi-sabi

“Wabi-sabi is a beauty of things imperfect, impermanent, and incomplete.

It is the beauty of things modest and humble.

It is the beauty of things unconventional.”

–Nancy Walkup, from Japanese Aesthetics, Wabi-Sabi, and the Tea Ceremony

 

My son, Kieran, has a wabi-sabi heart. As a child with HLHS (hypoplastic left heart syndrome), his heart is covered in stitches from multiple operations. Arteries have been disconnected and rejoined, material has been added in the form of patches and shunts (you can watch a diagram of how the heart is reconstructed in Stage 1 here–it really is amazing!). Even after 3 stages of surgical repair, Kieran’s heart is still missing his entire left ventricle–it is incomplete, it is imperfect, and it is utterly unconventional.

Like the kintsugi tea cup you see above, my son’s heart has been worked on by a skilled master, and he carries the marks of repair–we call them scars–both inside and out. Kintsugi is the art of repairing broken ceramics with a gold alloy, yet far from being an isolated artform, it is also a highly-prized representation of the wabi-sabi view of the world.

You see, kintsugi pieces are prized precisely because they have been broken. They are said to be more beautiful, more unique, and “stronger at the broken places” (to quote Ernest Hemingway) than they were in their original form. The gold alloy you see in these pieces is merely symbolic of their real value–a representation of how the broken lines are so beautiful, and so valuable, that they are rejoined with gold instead of glue.

In our busy modern lives, we often try to repair our broken places with glue. We quietly work to piece our lives back together after life-changing events, hoping that if we do a good enough job, the cracks won’t be readily visible. But how strongly does a glue hold the pieces of a life, or even a teacup, together?

Sooner or later, we all carry scars, whether they be internal, external, or both. We will all break in different places, and in different ways. Kieran’s sternal scar, running from the base of his neck to the top of his belly, looks more like kintsugi than glue–shiny, smooth, hard-fought, and as if something of great value and detail was invested there. We can see this value in our own lives, and in each other’s, and appreciate how this process can transform us into something more beautiful and special than we ever realized.

Embracing and accepting the beauty of our scars can put us at odds with a culture that attempts to sell us perfection, youth, and improvement in the guise of shiny new things. But these things, despite their market price, come off a factory assembly line, and their value might literally be a dime a dozen. Maybe the real value is in our treasures that have been fixed and patched and healed with the gold of experience, wisdom, love, and kindness.

My husband has had a long-standing admiration for Japanese art and cuisine that was catching–early on in our dating relationship, he inspired me to start reading Japanese novels and opened up a new facet of literature I had never considered before. Little did I know, however, that years later, I would find so much comfort and healing in the notion of wabi-sabi. Wabi-sabi has permeated Japanese culture in the arts of gardening, flower arranging (ikebana), tea ceremonies, and fashion. However, wabi-sabi is not confined to visual art, spatial arrangement, or a style of dress. It is an outlook on life, a way of seeing the world, and a reconsideration of all things beautiful and imperfect. It suggests that the most beautiful things in life–the most unique, the most fascinating, and the most miraculous–are those that have become more perfect through imperfection, and more valuable by being broken.

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.

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!!

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