Support PCHA in the Final Hours of Macy’s Shop for a Cause Charity Challenge!

PCHA is involved in the Macy’s Shop for a Cause Charity Challenge, a friendly fundraising competition raising money for causes like ours. We’ve got just over a few hours to go before our campaign ends. As of this morning we are sitting in 11th place sitting at $13,300 raised. When you add in the generous $3,000 from one of our Medical Advisory Board members as a Challenge Grant and the additional $2,000 from Macy’s we won during Bonus Challenge #1 that brings us to $18,300!! That’s amazing work and brings us almost to our goal of raising $25,000.

It’s not too late to help us Conquer CHD!

We are moving Mountains:

  • Hosting 2 national conferences in 2017 about patient empowerment through public reporting of hospital outcome information.
  • Received national coverage of our efforts on this issue in U.S. News and World report
  • Co-hosted a congenital heart legislative conference discussing public health policy, research and data for congenital heart disease.
  • Presently have a congenital heart disease research law working it’s way through Congress
We are touching lives:
  • In the first 6 months of 2017, we distributed more than 3000 Conquering CHD care packages providing essential resources and support directly to patients and their families
  • Shared more than 5000 copies of our Guided Questions Tool to help patients and family have important conversations with their doctors.
  • Reach between 50,000-200,000 people each week on social media with our education, support, research and awareness messaging.
PCHA is the resounding voice of the congenital heart community. Our voice is strengthened by the involvement of all of those who share our mission. 
Help us reach our goal of raising $25,000 to further that mission. 
  • $5 Provides a family with an educational resource card
  • $50 Allows us to provide a Conquering CHD care package of educational materials and Comfort items to a family whose child is in the hospital
  • $100 Helps us reach 20,000 people through social media
  • $250 Helps support an educational hospital site visit.
  • $500 Sponsors a parent or patient to attend our Legislative Conference in Washington D.C., and advocate for all those impacted by CHD by educating our members of Congress about congenital heart disease on Capital Hill.
 

 

 To Learn more & Donate CLICK HERE

Aron Matthew Northcraft

Aron’s mother Sara has been an active member of the CHD community, helping to educate people on how to support families after losing a child and advocating at the Legislative Conference in years past. Here she shares his story.

Aron Matthew Northcraft was born January 10, 2007 with Hypoplastic Left Heart Syndrome (HLHS). He was flown immediately after birth to Children’s National Medical Center in Washington, DC where he underwent the Norwood procedure the following day. He recovered, and in May of 2007, Aron, had the second (aka Glenn) of the three stages of surgeries required of all HLHS babies. The next 22 months of Aron’s life were spent at home simply being a little boy. Aron loved playing ball of all kinds (football and bowling were his favorites), loved Curious George and ADORED his big brothers (almost as much as they adored him)! During this time, it was very easy to forget that Aron was living with a very serious heart condition aside from the many medications he took daily.

Reality finally hit in April of 2009 when Aron went in for the third and final stage of surgery, the Fontan. Aron did not do post-Fontan well, and we found ourselves hearing the words “heart failure” and “transplant.” We soon began the journey to determine what was best for Aron. In October of 2009, we started the process of placing Aron on the heart transplant list. Unfortunately, God had other plans for our sweet boy. Aron passed away on November 19, 2009. He was such a blessing and truly a miracle! Aron will forever be in our hearts and on our minds.

When we started down the transplant road with Aron, I began to feel very angry every time I saw someone smoking. I was angry because Aron had no control over the cards he had been dealt and these “smokers” were destroying their life by their choice! Very soon, I was convicted about my health habits. Although I was not choosing to destroy my body with smoke, I was not eating right or exercising and, therefore, destroying my body by not being healthy. I decided in September (with the help of a very special lady) that I was going to start running. Our Fall was a little crazy…and heart wrenching.

After Aron passed away, I set a goal that I would like to run the Apple Blossom 10K in memory of my sweet boy! Our initial idea was to create “Team Aron” and have at least 4 people running in his memory. The more we talked about it, the more we realized how awesome it would be to have a gigantic team. We wanted to not only run in memory of Aron, but to raise awareness about Congenital Heart Defects and our local CHD support program.

Team Aron produced over 40 runners for the Apple Blossom 10K last year! We have encouraged Team Aron members to wear their shirts (if they are not running for a different cause) in as many races as they run in. In the past year Team Aron has been seen in many local foot races (Apple Blossom, Freedom Run, Apple Trample, Turkey Trot and the South Berkeley Christmas parade), a couple of local triathlons, as well as the Ford Ironman Florida.

Mental Health – Courtney’s Story – A Mom’s Perspective

As PCHA continues  our current series, Courtney Kile  shares with us how her experiences as Heart Mom to son Sully impacted her mental health.

I still remember the first time it happened. The surgeon had come in to tell us that the open heart surgery performed on my 3-day old son, was an outstanding success.  I remember looking at the surgeon calmly and saying, “Thank you very much,” and I turned on my heel and nearly sprinted down the hallway.  My mom and step mom followed close behind, calling my name, but my brain wasn’t computing her words.  I grabbed the door to the lactation room at the end of the hall and swung it open to close myself inside.

Then I completely and totally lost it.

I sat on the sterile vinyl chair, hugging myself, sobbing, and I think I even drooled a little.  I’d been holding in all these emotions, trying to process everything that happened in the last 30 hours and once I knew he “safe”, I couldn’t hold back anymore.  Little did I know, this would be the start of a near constant internal battle.

My son Sully was born in November 2011, seemingly healthy.  Just 36 hours later, local doctors discovered a Congenital Heart Defect and he was airlifted to the larger, metro hospital.  The 3rd day of his life, a team of doctors and surgeons operated on his 6lb. 8 oz. body. After a spectacular recovery from his first surgery, we handed him off to the surgeons again just 6 months later.  That surgery was also a screaming success.

I considered myself a pretty together person.  I felt like I handled stress well and had healthy coping skills (scarfing a king size Reese’s is a healthy coping mechanism, right?).  As time went on, I noticed myself beginning to change.  When we were getting ready to leave the house for any reason, I would retch and gag, and sometimes even vomit.  I would get sweaty and nervous, and I had no idea what was going on.  If I wasn’t with Sully, I would think of all the horrible possibilities that could happen.  I would replay these scenarios in my head until I would end up in a crying ball on the couch.  What was wrong with me?  Everything was fine, but I just couldn’t figure out what was going on.  I was too scared to talk to anyone about it.  I have a job that keeps me in the public eye.  What if they thought I was crazy?  What would my family think?  I knew it wasn’t normal to need a gallon of Pepto just to go and get groceries.   I’d dealt with a mild form of anxiety all my life, but never like this.  This was different.

Right after Sully turned two, a friend a mine sat me down for a frank discussion.  Being a mental health practioner, she’d seen this before.  She told me that she wanted me to talk to my doctor.  I tried to blow her off, but she pushed further.  Then she said it, “I think you have PTSD.”

Umm… what?

I was stunned.  I wasn’t in the military and hadn’t been through a war.  How could I possibly have PTSD?  There had to be another explanation.

Even though I thought my friend was way off base, I decided to call my doctor.  After talking to my doctor and being referred to a therapist, it was confirmed; I had Post Traumatic Stress Disorder (PTSD). The diagnosis was hard to swallow.  I blamed myself for not being able to control my emotions and thoughts.  I felt crazy.

Then, I started talking to other parents who’d been through the same or similar situations.  It was during these conversations that I realized that I wasn’t alone.  All these other parents had feelings like I did.  Though none of us had been deployed to a warzone, we were on the frontlines of our own; battling for our children’s lives. We’d waged war against catastrophic medical conditions that threatened to kill our children; and sadly, some of those medical conditions took the lives of some sweet warriors.

With a newly restored hope, I decided to talk more about PTSD and mental health.  There is such a stigma surrounding mental health issues.  The world is judgmental, that’s a fact, but we cannot stand silent in battle alone.  We need to talk about it.  We need to let the masses know that this is a real struggle that stems from healing wounds.  Seeing your child hooked up to 20 IV racks, with chest tubes, and a ventilator, is not something you can easily get over.  When you face the mortality of your child, you change. It is something that rocks you to the very core of your being.

The biggest thing I’ve learned since my diagnosis is self-care.  I can’t be the mom Sully needs unless I take care of myself.  Admitting you need help can be tough for people, but it is a necessity.  You can’t do this alone. Do not be ashamed.  We are in this together.

 

I’m happy to report that Sully is almost 6 years old now.  He is starting kindergarten in the fall. He’s happy, healthy, and the joy of our lives.  As for me, I’ve learned tips and tricks to manage my anxiety and panic.  Don’t get me wrong, I’m not perfect.  There are still times that leave me in a nervous mess, reaching for my inhaler.  But those times are few and far between. Every day I choose to take care of myself and not let PTSD control me.

 

 

 

 

 

Courtney Kile hails from Duluth, MN.  She is the mom to an amazing CHD warrior named Sully and wife to Robert.  Courtney and her husband run Project Heart to Heart, a Minnesota based non-profit serving families who have children born with Congenital Heart Defects. She is a paralegal by trade and uses her skills to help CHD families.

Lucas Iguina

In January of 2007 Lucas was diagnosed via utero with Hyploplastic Left Heart Syndrome. We were given three options before his birth – one was a procedure of three palliative surgeries that he would need to survive. Lucas had open heart surgery at 3 days old, a second open heart surgery at 4 months old, and his final open heart surgery at two years old to repair the half a heart he does have, all performed by Dr. William DeCampeli at Arnold Palmer Children’s Hospital in Orlando. He has had many interventions since birth, his last intervention was a stent replacement in February of 2016. He also has a blood disorder that causes his red blood cells to not break down easily. CHD is lifelong, there is no fix or cure, and its care is complex but there is hope. Lucas is doing amazing today, he enjoys to live life to the fullest and does not let his CHD hold him back. Our family is active and we advocate for the CHD community to support families just like ours and raise awareness. Lucas has visited D.C a few times to advocate for CHD and plans to continue having his voice heard! Together we can conquer CHD!

Ezra Unzen

Ezra was born August 13, 2014 in Minneapolis, Minnesota with Hypoplastic Left Heart Syndrome, Double Outlet Right Ventricle, Coarctation of the Aorta, and Ventricle Septal Defect. He underwent a successful Norwood surgery at 5 days
old. He had a heart cath at 4 months old which
led to his 80 minute cardiac arrest and caused a severe anoxic brain injury. He wasn’t
expected to live 4 months following the arrest,
let alone to his 1st birthday. He lived a joyful life
with loving family and friends until November
4th, 2016 when he suddenly died of heart failure.
Ezra had a huge smile and touched the lives of
everyone who knew him.

Ezra’s parents are grateful for the lifesaving and compassionate care he received through his life. Together, with Project Heart To Heart, Ezra’s parents have started the Ezra John Unzen Scholarship. The scholarship will be awarded to high school seniors in the Hermantown, MN district who want to pursue a career in healthcare. With the first scholarship being awarded in May 2018, Ezra’s memory lives on not only through the life he lived, but through the future doctors, nurses, and healthcare professionals coming out of the Hermantown School District.

 

Cosponsor the Congenital Heart Futures Act of 2017 (S.477/H.R.1222)

 

 

We urge Congress to cosponsor the Congenital Heart Futures Reauthorization Act (S.477/H.R.1222). To cosponsor this important legislation please contact Max Kanner (max_kanner@durbin.senate.gov) with Senator Durbin’s office or Shayne Woods (Shayne.Woods@mail.house.gov) with Congressman Bilirakis’ office.


Congenital heart disease is the most common birth defect and the leading cause of birth defect-related infant mortality. Nearly one third of children born with CHD will require life-saving medical intervention such as surgery or a heart catheterization procedure. With improved medical treatment options, survival rates are improving with a population of 2.4 million and growing. However, there is no cure. Children and adults with congenital heart disease require ongoing, costly, specialized cardiac care and face a lifelong risk of permanent disability and premature death. As a result, healthcare utilization among the congenital heart disease population is significantly higher than the general population.

As part of these ongoing public health surveillance and research efforts, the Centers for Disease Control and Prevention recently published key findings that report hospital costs for congenital heart disease exceeded $6 billion in 2013.

Congenital Heart Disease is common and costly, and attention to the needs of this community is critical.

 

Original Congenital Heart Futures Act

First passed into law in 2010, the bipartisan Congenital Heart Futures Act was groundbreaking legislation authorizing research and data collection specific to Congenital Heart Disease.  This law called for expanded infrastructure to track the epidemiology of CHD at the CDC and increased lifelong CHD research at the NIH.

Since the enactment of the Congenital Heart Futures Act, Congress has appropriated $11 million to the CDC for these activities. The Congenital Heart Futures Act also urged the NHLBI to continue its use of its multi-centered congenital heart research network, the Pediatric Heart Network (PHN) that help guide the care of children and adults with CHD. Together, these efforts have improved our understanding of CHD across the lifespan, the age-specific prevalence, and factors associated with dropping out of appropriate specialty care.

We are excited that the reauthorization of this important law will allow the CDC and NIH to build upon existing programs and focus on successful activities addressing this public health need.  First re-introduced in 2015, the CHRFA did not get passed during the 2015-2016 Congress.  It was reintroduced in February of 2017 with some changes to the language to help forward movement of the bill, but the basic intent of the legislation is the same.

 

Key Aspect of the new Reauthorization Bill

The CHFRA continues these important activities and builds on them by:

  • Assessing the current research needs and projects related to CHD across the lifespan at the NIH.The bill directs the NIH to assess its current research into CHD so that we can have a better understanding of the state of biomedical research as it relates to CHD
  • Expanding research into CHD. The bill directs the CDC to continue to build their public health research and surveillance programs. This will help us understand healthcare utilization, demographics, lead to evidence-based practices and guidelines for CHD.
  • Raising awareness of CHD through the lifespan. The bill allows for CDC to establish and implement a campaign to raise awareness of congenital heart disease. Those who have a CHD and their families need to understand their healthcare needs promote the need for pediatric, adolescent and adult individuals with CHD to seek and maintain lifelong, specialized care.

This comprehensive approach to CHD – the most prevalent birth defect – will address a necessary public health issue and lead to better quality of life and care for those with CHD.

If you have any questions about this legislation, please contact our Director of Programs, Amy Basken, at abasken@conqueringchd.org.

Together, we will CONQUER CHD!

 

Luke Toth

In October of 2008, our heart hero, Luke, was born. We were fortunate to know about Luke’s congenital heart defect (CHD)tetralogy of Fallot—at our 20 week ultrasound. At one week old, Luke had a heart procedure (BT Shunt) and spent his first 23 days of life in the hospital. This was a temporary fix until he could have a full repair. At 9 months old, Luke had his first open heart surgery to correct his heart defect. His surgery was on Wednesday and by Saturday afternoon, we were home. We could not believe how amazingly well Luke did.

For nearly 4½ years Luke strived as a “normal” child with regular visits to the cardiologist every 6-12 months. Suddenly, he was admitted to the hospital with stomach flu. Doctors determined that many of his organs had completely shut down due to severe dehydration. The medical staff immediately started re-hydrating him. Luke showed signs of improvement the next day and looked like he was on the road to recovery. The staff monitored him regularly over the next couple of days to check how well his heart was working, but they didn’t find any problems.

Then, on the third day, Luke’s good health took a turn for the worse. Just as they had done the day before, the medical staff performed some tests, but this time, his chest x-ray showed his lungs filled with fluid. When they did a special test called an echocardiogram (echo), which is an ultrasound picture of the heart, the technician, by chance, started looking at the outside of Luke’s heart first.  Usually, an echo is performed by focusing on the inner workings of the heart. But, on this particular day, when the tech happened to check the outside of Luke’s heart, the doctor saw a spot that had never been seen on any of the previous tests, including Luke’s earlier echoes after his heart repair.

This chance finding led to more tests that showed his left pulmonary artery, the blood vessel that takes blood away from the heart to the left lung, had completely closed and was not supplying his left lung with blood. The doctors were astonished, especially considering all of Luke’s heart repairs took place on his right side!

This chance finding was the missing piece to the puzzle. Suddenly, everything made sense. When the team was hydrating Luke, they were giving him enough fluid thinking that both pulmonary arteries were working and sending fluid to both lungs. In actuality, all the fluid was going to one lung instead of two.  Because the fluid in his body had nowhere to go, Luke almost lost his life.  This chance finding saved his life.

Since then, Luke’s body has been running on one lung and will continue to do so. His heart doctor says that is 100% okay.  The part that gives us the most chills was when his cardiologist told us, “I always knew Luke was a special boy, but this diagnosis happened on accident. He showed us something that we have never seen before with the heart. We didn’t know a working artery would close itself off to protect the body. Now that we know this we can look for it, and your son, without a doubt, will save many lives. ”

Since this day, Luke’s case has been in many research studies to help other heart patients. We share Luke’s journey in hopes of helping other CHD families and spreading much needed CHD awareness to help in Conquering CHD!

 

Becoming a fundraiser for PCHA!

Want to help us Conquer CHD? Become an individual fundraiser to support critical programs at PCHA. It takes less than 5 minutes and is as easy as 1, 2, 3! 

1. Fill out the online sign up form  (45 seconds)

  • Enter your first and last name.
  • Enter your mobile phone number.
  • Enter your email.
  • Click “Become a Fundraiser”.

2. Click the link to complete registration (45 seconds)

You’ll receive a text message and that will guide you to a page where you can complete your registration. This link and the email will be titled “Thanks for becoming a fundraiser!”

Click the link and enter your password.

3. Customize your page (< 3.5 minutes)

The last step is to personalize your page.

  • Upload a picture (a selfie will work!)
  • Set fundraising goal
  • Personal message telling people the impact they can have if they give right now.

Click Save.

Don’t forget to share your fundraising page to social media to get your friends and family involved.

CLICK HERE to sign up and get started!

Emersynn Frost

Emersynn was born this past November and is our miracle baby! She is doing absolutely amazing!

At our 20 week anatomy scan, we found out that our little girl has a congenital heart defect (CHD). Shortly after this news, we were referred to a high risk OB and a pediatric cardiologist. When we saw the ped cardiologist, he broke the news that she does indeed have a complex heart defect which is VERY rare. Our baby has congenitally corrected transposition of the great arteries (ccTGA), ventricular septal defect (VSD), pulmonary stenosis (PS) and dextrocardia. 1% of pregnancies end up with a baby with a CHD. Out of those one percent, .5 – 1% end up with ccTGA. That is how rare the defect is! Only 5,000-10,000 people in the US have this condition!

A little bit about her condition: In ccTGA both ventricles (pumping chambers) of the heart are reversed. Fortunately, the arteries are reversed too, so the heart actually “corrects” the abnormal development, thus the name “congenitally corrected transposition of the great arteries.” However, ccTGA is a complex malformation in which the heart is far from being normal.

In a normal heart, the left-side pumping chamber (left ventricle) sends blood to the entire body. The right-side ventricle pumps blood only a short distance, to the lungs. The left ventricle is built to last longer than the right ventricle: 80 to 100 years if no other health problems exist.

In ccTGA, the heart twists abnormally during fetal development, and the ventricles are reversed: The stronger left ventricle pumps blood to the lungs and the weaker right ventricle has the harder chore of pumping blood to the entire body. The right ventricle is not built to last as long as the left ventricle. Emersynn is currently almost 5 months old and has not had any surgery thus far! She is defying all odds and doing SO amazing! She is growing well and hitting all of her milestones on or before (!) she is supposed to! This little girl amazes me more and more everyday! She is such an inspiration to everyone around her and is such a strong little warrior!

Jennifer Weiner

Jennifer Weiner was diagnosed with Truncus Arteriosus and a VSD after birth in 1982. She has had two open heart repair surgeries, at 18 months old and 17 years. After complications arose and various anomalies were uncovered in early adulthood, Jennifer had a stent placed in her LPA and received an ICD. Now 35, she is a graduate of DePaul University, with a degree in Elementary Education and an MA in English and Creative Writing, from SNHU. Jennifer currently volunteers for the Pediatric Congenital Heart Association, both nationally and locally, managing the PCHA Blog and IL Chapter Communications. She also serves on the steering committee of Chicagoland Cardiac Connections, an organization that provides support and resources for patients with cardiac devices, based out of Lurie Children’s Chicago, and writes for Heart to Heart with Anna, a CHD themed podcast. Jennifer will continue to be followed by an Adult CHD team throughout her life.