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.

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.

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.

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.

Congenital Heart Awareness – from our Partners at the CDC

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

Isabella2

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

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

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

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

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

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

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

Understanding and Treating Heart Defects – National Institutes of Health

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

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

baby smiling

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

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

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

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

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

Kristin M. Burns, M.D.

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

 

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!

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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.