What’s a Birthday without Party Favors?

And the winner is:

Diane Kowalik

 

Thank you to all those who entered.  Our contest is now over.  A winner was picked at random from qualified entries using Random.org

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As we celebrate our 1st Birthday, PCHA is giving away a fun assortment of Birthday Party Favors including:

  • Happy Birthday Hat
  • Happy Birthday Sunglasses
  • Birthday Party Horns (6)
  • Birthday Noise Makers (4)
  • PCHA T-Shirt (Not pictured. Size to be determined by winner)
  • Confetti

Enter all week long!

You will be able to enter multiple times:

  • Share your birthday wish. Share a new one each day!
  • Participate in Birthday Photo Fun!
  • Be a fan of our Facebook Page.

The contest will close at 5pm ET, Friday August 22nd.

We will randomly select the winner on our Birthday – Saturday, August 23rd.  The winner will be contacted directly, and announced publicly via a blog post on Monday, August 25th.

Enter now:
a Rafflecopter giveaway

* Please note that the Pediatric Congenital Heart Association is very concerned about your privacy. We will not share your personal information at anytime without prior consent. Entry into this contest will automatically enroll you into our 1 Voice / 40,000 Strong email list.  You can opt out from receiving emails at any time simply by selecting unsubscribe on the email or sending an email to info@conqueringchd.org with UNSUBSCRIBE in the subject line.

Save the Date – Legislative Conference 2015

PCHA is proud to bring you:

Congenital Heart Legislative Conference 2015
February 25-26, 2015
Hyatt Regency Hotel Washington D.C.

We are looking forward to collaborating with other congenital heart organizations to provide you with:

  • Up-to-date policy information and how it impacts children and adults with heart defects
  • Leadership training to develop skills needed to share your story and make a difference
  • A day on Capitol Hill meeting with your legislators

Mark your calendars – if you have ever attended CHD Lobby Day before, you won’t want to miss this!

Further details will be available as we prepare to open registration in December.

Save the Date Logo Long

Birthdays – Reflections and Celebrations

My sister, Kristin, was born in January 1980 with TOF.  Her complete repair, at Boston Children’s, was one of the first in the country.  I know this because Wikipedia states that the complete repairs began in 1981 and I know my sister’s surgery happened in late 1980.*

I never thought about this until my own daughter was born in January 2012 with the exact same defect.

As PCHA celebrates it’s first birthday, I decided to write about birthdays for our blog.

Maggie Birthday for PCHA

My mom told me that Maggie’s birthday would remind me every year of the pain and anguish we felt after her TOF diagnosis.

I worried about this the entire first year of her life.

Turns out, we arrived home after work on Maggie’s first birthday to 2 baskets of flowers, a balloon flying from our mailbox and a bunch of balloons tied to our front door.  Such a joyous day.  The next day, Saturday, our family from all over the state came to watch her eat her own little chocolate cake and scoot around with her cousins.  We ate pizza and drank soda from paper cups.  I never once thought about the day the pediatrician told us our daughter had a severe heart defect that would have to be fixed through open heart surgery.

Why would I?  She is alive, she survived 2 surgeries and she is the coolest little 26 pounder who eats Z Bars while dancing to the music from “Paw Patrol.”

My mom also warned me her scar would make me sad.  Sometimes I worry that she will feel self conscious and my heart aches to think of a future classmate teasing her or asking her questions about the tiny, white line down her chest.  But she asked me a few months ago, “What dat?” and I told her “You had surgery.  Just like Aunt Kristin.”  So now she points and says “I had surgry? Like, like Kristin and not you?” It’s the sweetest, most innocent comment and it does make me sad sometimes for a quick instant until I thank God and every angel in heaven that our daughter is OK.

Maggie will turn 3 in January and I think I am going to have her party at the circus school in town.  I think twirling ribbons with 10 other toddlers after eating a bunch of cake will be a blast.  Every birthday Maggie celebrates reminds me of how blessed we are and I send prayers out to all the heart families struggling with their little ones.  I do that every day, not just birthdays.  We are a special group of people and I don’t take any birthday for granted.



*http://en.wikipedia.org/wiki/Tetralogy_of_Fallot

Total surgical repair

The Blalock-Thomas-Taussig procedure, initially the only surgical treatment available for tetralogy of Fallot, was palliative but not curative. The first total repair of tetralogy of Fallot was done by a team led by C. Walton Lillehei at theUniversity of Minnesota in 1954 on an 11-year-old boy.[21] Total repair on infants has had success from 1981, with research indicating that it has a comparatively low mortality rate.[22]

HeadShotSDAA North Carolina native, Stephanie Dorko Austin works as a political fundraising consultant and serves on the Board of Trustees of Follow the Child Montessori School and the development committee of the Frankie Lemmon School. A Phi Beta Kappa graduate of Trinity College in Washington, DC, Stephanie and her husband, Will, live in Raleigh with their awesome and amazing daughter, Maggie.

Your Donation = The Perfect Gift!

Help us Celebrate our Birthday!

Birthday donate button 2

Sometimes it is really hard to pick out the perfect present.  That is why gift cards have become so popular.

Since it is our birthday, we wanted to make gift giving as easy as possible.  In fact your gift does more than simply make us smile:

Your gift supports activities such as:

  • Research Matters – building compassion and engagement in research
  • Quality Project – uniting medical professionals including surgeons, cardiologists and nurses, leaders in quality, with parents – 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.

This is one birthday gift that will truly make a difference!

Donate, today!

“As we work to create light for others,

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:
Facebooktwitter-buttonlinkediniglogocolor










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.