Unexpected Hero

Special thanks to Mark Gentle who agreed to share his son’s story with us. The following photo was also shared with permission.

Carter

He was scarred.  He was scared.  And now, he’s a superhero.

Carter recently underwent open heart surgery to repair a problem with his heart he has had since he was born. The surgery left a large scar down the front of Carter’s chest, along the center of his ribcage.   When the bandages were removed, Carter was devastated by the marks on his chest. So, dad posted a picture of his son, asking friends and family to show their love and support for Carter and his new look.

Carter was born with the most common birth defect.  1 in 100 babies are born with congenital heart disease (CHD).  One third of those born with CHD will require life-saving intervention or heart surgery at least once during childhood.  That’s thousands of children, each year.

Carter was concerned that he was going to look different.  What he didn’t know was that his difference was going to make such a positive impact.  In a few short days, Carter’s picture has received more than 1 Million likes and more than 75,000 shares.

Carter, you are not alone in this journey.  Thank you for sharing your struggles and making one of the largest impacts in CHD awareness history!

The Original Post Can Be Found Here. Please visit, like and share!

 

Can You Hear Me Now?

Guest Blogger Chris Perez knows first hand that even the littlest action can have a big impact. The Pediatric Congenital Heart Association offers many ways to get involved.  Click on any of the following for more information or to get involved: volunteering, contacting your lawmakers, sharing your story.  By working together, even the smallest of actions can help Conquer CHD.

 

Can You Hear Me Now?  Good.

Remember this guy?

IMG_1458

Yes, I’m bringing back the Verizon Wireless Guy, who used to walk around saying “Can you hear me now?  Good.”  It was all about the strength of Verizon’s network and the ability to be heard clearly wherever you are.

Stories about heart warriors are always struggling to be heard in a busy and noisy world.  Still, they need to be heard, and we want them to be heard.  As a heart parent, I’m sure you’re connected with lots of other heart parents and it seems like they’re doing some spectacular things like speaking at conferences or even traveling to lobby with government.  And you…you can barely get out of the house.  You just want to be heard.  Well fear not, heart parent: you can still be heard on a smaller – and still VERY important – scale.

It’s OK to Start Small

While your first inclination is to go BIG – this is about your child, after all – lots of big things start small.  Doesn’t a fire start with a tiny spark?  So maybe you can’t make a trip to Washington DC or to your state’s Capital to do some lobbying.  All is not lost: you can still do it at home.  Start with your Mayor or City Council.  Schedule some time to tell your story and see if your local government can help pass that story along.  You’ll find that they love to hear from their constituents and possibly even have much more time to listen to you than someone in a larger level of government.  I remember reaching out to the Mayor of Charlotte regarding a proclamation for CHD Awareness Week and in a week or so I actually received one in the mail, which was really awesome!

Local news is a great way to share your story too: tv news, the newspaper, and even those smaller, local papers are great.  People complain that the news is full of bad stories, but I promise you they love good news just as much as you do.  There’s a weekly paper in my area that has done a really awesome job of sharing my son’s journey and people do, in fact, read that stuff!

If you’re shy and those things aren’t for you, then maybe you should consider starting a blog of your own.  I can attest to the power of the written word only through a blog: it’s given me an opportunity to connect with people throughout the world.  And all you have to do is type!  Likewise I encourage you to share your story with the Pediatric Congenital Heart Association: just go to http://conqueringchd.org/ and click on “Share Your Story,” and off you go.  You never know how your words can uplift someone who needs it.

Get Involved

Weaving yourself into the lives of others is a great way to share your story in a meaningful way.  Of course, I definitely encourage you to stay involved with the efforts of the PCHA: educate yourself, share with others, and advocate for more CHD research.  Take some time to look into local groups as well: maybe it’s a patient/family advisory committee through the Children’s Hospital, a support group, or a local chapter of a group like Mended Little Hearts.  These are opportunities to support and be supported and I can’t stress enough the importance of this.  My local group is called Camp Luck and they do amazing work that involves supporting families and running a medically-supervised camp for heart kids.  They hold lots of events throughout the year where my kiddos can come and play and you know you’re in the room with family: everyone understands you.  We’ve had the chance to meet some really cool people and when we get to share in our experiences, we find we get stronger.

Maybe – just maybe – you have some extra time on your hands.  What to do with it?  Volunteer!  There are a lot of heart parents who volunteer at their local hospital and it’s a wonderful way to give back.  There is tremendous value in being a volunteer, both personally and to the organization you’re supporting.  People also listen to volunteers: if you’re passionately involved at the Children’s Hospital, for example, it can open doors to sharing your story and helping people out because that passion will show!

Make Sure Your Opinion Matters

Ok Heart Parents…let’s be honest with one another here.  After a hospital stay, you get home and work on getting back to normal.  In the mail comes…dun dun dunnnn…a survey.  You throw it away, don’t you?  Come on, admit it!

IMG_1459

Well I have some news for you…these surveys are important…REALLY important!

You see one of the big changes in healthcare today involves the patient experience.  There’s the realization that people come into the hospital automatically expecting excellent medical care.  Duh.  I mean you don’t go in and say things like “I hope they operate on the correct knee today!”  Good quality care is a given, and it’s something that healthcare has been touting for years.  While that’s still important, healthcare is realizing that patients and their families have to actually be treated like human beings.  Have you had a rotten experience in the hospital?  Tell someone.  Feel like you don’t matter as a parent?  TELL SOMEONE!  Hospitals now have staff who handle these things day in and day out…and it’s not a mindless complaint process: they dig into data and look into root causes of problems in healthcare…and ultimately they work to fix that culture so the complete and total experience in the hospital is the best it can be.

So where do you think the hospital staffers get their data?  You guessed it: SURVEYS!  That’s why they’re so important: if your hospital is awesome, tell them they’re awesome…it really goes a long way.  If it wasn’t the best experience, say so in your survey, because nowadays a lot of federal reimbursement for hospitals is tied to patient experience scores and goals.  So it’s in their best interest to give you the best experience possible.  Now that doesn’t mean you should demand ridiculous things from your medical team, but rather they should be treating you with human connection, empathy and compassion.  They should communicate, they should treat you as if you were their loved one, they should include you in the whole process.  If they don’t, speak up!

Help out your local Children’s Hospital by filling out your surveys and providing good, honest feedback…it’s how your story can help them improve!

It Only Takes a Spark

What does it take to have an impact with your story?  Not a whole lot.  You don’t have to go big or go home: you can start small and let the fire build.  I really want to encourage you to reach out to local media or local government, get involved in your community, and make your voice heard through surveys!

 

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

Finding Hope in Washington D.C.

Tori is  mom to 6 amazing children. 1 grown daughter and 5 boys. 4 are here on Earth and 1 is forever 13 months old and watching over us from heaven. You can read more about her journey on her blog: Finding Hope without Sterling. She has been a tremendous advocate for the Pediatric Congenital Heart Association.  Here, she tells us about her first trip to Washington D.C. to advocate.

SterlingI had the most amazing experience last week while in Washington, D.C. for the Congenital Heart Legislative Conference. I met so many wonderful people who share my passion for CHD advocacy. I was able to help out a little behind the scenes and even check in many of the participants. I learned so much and am still processing it all.

We were there to meet with our legislators and ask them to support NIH research to prevent, treat and cure CHD. For $10 million in CDC funding for data collection and public health research. And for $250 million in funding for the Department of Defense Peer Reviewed Medical Research Program. We would like them to take action by signing the Congenital Heart “Dear Colleague” letter. To join the Congressional Congenital Heart Caucus. And to submit a Congenital Heart Appropriations Request.

If you don’t understand the last paragraph, no worries. I had it explained to me and still had a hard time remembering it all. The important thing to know is that this is to support funding for research and for data collection. Research to help those we know have CHD’s treatment and hopefully one day a cure and to better detect those we don’t know have them, like Sterling. Our kids with CHD’s are becoming adults with CHD’s (which is a testament to the research already done!) and there just isn’t a whole lot of data out there for treating them.  There also aren’t very many doctors with experience in treating them. These things need to change. Supporting the above will help change that.

I was very honored to meet with our representatives and our senators and to share our stories. In my group we had 2 parents whose babies died from CHD’s, one knew of the CHD and I of course did not. Then we had 3 adult CHD patients and 1 friend of a patient. I was so nervous but they helped me out and I soon discovered that our stories are powerful. Watching the staff members come out with smiles and looks of “lets get this meeting done” turn to sadness and taking the time to ask questions and really try to understand what we were asking for and why it was so important.

Read the rest of the story, and more from Tori, here.

HLHS Dad goes to Washington D.C.; Part 1

Chris Perez attended the Congenital Heart Legislative Conference on February 25-26, 2015.  Here, he writes about the first day of this adventure. As the father of a child with a serious congenital heart defect, Chris regularly writes about his experiences in the CHD world on his blog: Half Heart. Whole Life.

As Day 1 began to arrive it became obvious that the weather was determined to throw a monkey wrench into my plans.  On the day before I was scheduled to fly out, we actually got a little bit of snowfall here in Charlotte.  Now it didn’t even snow a half-inch and none of it stuck to the roads, but here in the Carolinas that amount of snow is equal to the apocalypse!  Schools closed, people didn’t go to work, the grocery stores were packed.  Me?  I went to work.  After all, I’m a New Englander…so for me this was just an average Tuesday.  Still, I’d be lying if I wasn’t concerned about my upcoming travel since they cancel things at the drop of a hat here.  Luckily, though, the flight was still on and the roads were nice and clear. I had everything packed, including my leave-behinds and some CHD Awareness colored socks (I love crazy socks):

 

I had a good 50-minute flight into DC, picked up my bag and used Uber for the first time to get to the hotel.  I had a credit due to being a UNCC alum, so I put it to good use.  What a great experience…WAY better than a taxi!  After a few issues with my room key (the first 2 didn’t work) I managed to get a little down time before registering for the conference and grabbing some lunch.  At registration we were given these cool pins that I immediately put on and it actually started up a lot of conversation in the elevators, which was great:

 

I jumped right into sitting with a table full of strangers and it was great to meet people from all across the country: I met a heart parent from right there in DC, a heart family from Florida, a family who unfortunately lost their little one (kudos for them for being there to advocate…so brave!), and I also met this guy:

This young man is Jacob and he’s from San Diego.  He was born with HLHS and received a heart transplant at a young age.  He was a very cool guy and had an amazing story and outlook on life.  I got to spend some time hanging out with him and his Aunt on this trip and I’m glad I had the opportunity.  I am going to blog more in depth about him and the work he’s doing, so keep an eye out for that!

So anyhoo, we kicked off our training, which included discussions on how to tell our story, decorum on the Hill, how to use social media, and lots of presentations from guests.  These included a CHD survivor and a heart parent (her son was the Darth Vader kid from that car commercial a few years ago).  We also saw a very interesting presentation from the NIH regarding CHD research.  It was really fascinating and I am going to be blogging more in depth about it soon (I know there’s a lot of “see me later” stuff going on), but here’s a little preview:

TO SEE THE PREVIEW AND READ THE ENTIRE BLOG, visit the original post here.

A Time to Gather

A Time to Gather (Mile)Stones Together: The Importance of Marking Our Days

steenman Garvera

As Solomon said in Ecclesiastes, “There is a time for everything–” including a time to celebrate.

Sometimes, it’s easy for the days to blur together–after all, they often fly by! I’ve heard my more cynical friends scoff at those who attach meaning to new year’s resolutions, or even celebrate New Year’s Eve at all–after all, they say, it is just another day. They argue that the divide between last year and the new year is completely arbitrary. What is age but a number? What is a birthday but just another day older, like every other day?

As a heart mom, I’ve learned that birthdays are more than an excuse to have cake and receive special gifts.They aren’t even “just” a victory–because every precious day is a victory. I’ve come to see birthdays as a time to reflect on where we started and on how far we’ve come since then. I’ve learned the importance of marking our days as a way of counting our blessings together–a “gathering of stones,” so to speak. Marking days with observances, as well as gathering stones, is a cultural practice that spans history and geography. Living in Nepal, I saw where people had gathered stones to create shady places for travelers to meet, rest, and reflect during long journeys. In Mongolia, I saw ovoos–piles of stones where travelers gave thanks to the elements for safe passage. Other cairns serve as markers for mountain summits, guideposts on paths, or memorials to historical events. in other words, they help us find our way and they connect us–fellow travellers–to each other.

Kieran

Like PCHA, my son Kieran also celebrated his birthday this month. As a baby, I would hear about all the milestones he was “missing,” when in reality, he wasn’t missing them at all–he was just catching up to them! Now, when I look back on how he wasn’t talking by his first birthday and I compare it to the picture below, which shows how proud he is for designing and making his own birthday cake, I realize just how far we’ve come in the past 6 years. In a system filled with benchmarks for children–be they developmental charts at the pediatrician’s office or educational assessments at school–we in the CHD community can come together and celebrate our own milestones. Together, we can gather these blessings like stones and put them on the map of our own unique journeys. My guess is that if we gather our blessings together, they would look something like Swiss cairn pictured above, which marks the summit of a mountain. It’s no coincidence that my son’s middle name is the Nepali word for “mountain.” It’s because we knew even before he was born that he would reach the summit of his special journey someday and that when he saw the view from the top, he would know it was all worth it.

There’s a reason, I believe, for our tradition of sharing birthdays and other holidays with family and friends. A reason that can include cake and ice cream, but that also includes “a time to gather stones together” as a way to mark this day as a place worth setting another guidepost on the map of our journey. I am happy that, as a community, we are invited to celebrate PCHA’s first birthday together. Research, treatment, and outcomes are always evolving in the CHD world. As heart parents and as a community, I hope we will saying, “what a difference a year makes!” for many years to come.

 

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.

 

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

20140818_083119

 

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.

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.

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

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.