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.