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

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!

preemtive love logo

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.

CHD Awareness Week – Do Something.

This is a busy time of year for those of us in the Congenital Heart Disease Community.  It is Heart Month.  Today is Go Red Day.  It is also the first day of CHD Awareness Week.

Spreading awareness about the most common birth defect is the critical first step in Conquering CHD.  By spreading awareness, we can educate others about this growing public health burden that is devastating to families across the country.  The blog this week will feature posts from Preemptive Love, the CDC and more, as we work with our partners to help spread awareness in our communities, in Washington D.C. and around the world!

However, I strongly believe that awareness is only impactful when it is paired with education and leads to action. During the frenzy of awareness activities this month, we are encouraging the community to share our message: Be Aware. Learn More. Do Something.
Be Aware

 “I alone cannot change the world, but I can cast a stone across the waters that create many ripples.” – Mother Theresa

Here are a few ideas about what you can do:

1) Be a part of something bigger.

Become a partner of PCHA.  Join the rapidly growing movement that is making a difference.
There is no obligation on your part.  By signing up to receive our emails, you will get an inside look at PCHA.  You will get advanced notice of opportunities to volunteer, advocate and influence.
Sign up today!

2) Use your influence, right away!

Whether you realize it or not, you have a circle of people around you that listen to what you say.  Encourage them to join the movement, too.  Encourage them to sign up, too.  The more people united in messaging and action, the greater impact we can have! 

3) Volunteer.

Your time and talents are very valuable to PCHA.  Our volunteer needs change regularly, but we will try to involve you in any way that we can.  If you are interested in volunteering, please email volunteer@conqueringchd.org.  Include how much time you are able to commit on an average monthly basis and what ways you think you’d like to help.

4) Advocate.

Use your story to make a difference.  We will be asking you to email, call or visit decision makers.  Whether it is a doctor or lawmaker, your story is powerful and can move someone into action!  Click here for our most recent alert to say Thank You to your lawmakers.

5) Donate.
Your story is powerful.  Your dollar is powerful, too.  In order for PCHA to be successful, we need to fund our projects.  Give what you can, every dollar counts.  Give for someone you love, give for yourself, give to help the thousands of people dealing with CHD that will, in turn, benefit from the education, research and advocacy support we provide.
Donate Today!

Zoe Lihn

Zoe Lihn

In December of 2009, Stacey earned her title as “heart mom” when her unborn daughter was diagnosed with Hypoplastic Left Heart Syndrome at 18 weeks gestation. Since birth, Zoe’s undergone three open heart surgeries (the Norwood, hemi-Fontan and Fontan) and is living well in Phoenix, Arizona with her mom, dad (Caleb) and big sister (Emerson).

Zoe continues to inspire her mom, who advocates on a wide-scale for improved outcomes in the field of pediatric cardiac medicine. While Zoe’s journey with her congenital heart defect has been challenging (which is always an understatement), her strength and courage remain a testament to our CHD communities’ resiliency and power. Together, we can make a positive impact for our children’s future.

Rayna

Rayna Schuh

In June of 2006 my husband Tim and I found out that our family would be blessed with the gift of baby. As you can imagine we were excited and anxiously awaiting that first Dr.’s appointment to hear our new baby’s heartbeat. We had no idea if our baby was a boy or girl. Nor, that the heartbeat we heard at that appointment was coming from a heart that had a critical congenital heart defect.

Rayna was born February 16, 2007. She was perfect, or so we thought. We took Rayna home and just thought she was a tiny little girl who tired easily and didn’t gain any weight. After many trips to the doctor we were reassured she was fine and I was a paranoid mom.

In the summer of 2010, Rayna was diagnosed with strep throat and the doctor heard a disturbing heart murmur. I thought, “Well, everyone has a heart murmur.” After some thought, we took her back 2 weeks later and requested that her heart be checked. Rayna’s little brother had a hole in his heart that we needed to check, and I had that “mom feeling” that something was not right. That appointment would become the beginning of our journey into the world of Congenital Heart Defects.

Rayna had many appointments to determine what her defect was. In September of 2010 she underwent a sedated MRI and we were told she has a heart defect known as Total Anomalous Pulmonary Venous Return -TAPVR – and a very large ASD or hole in her heart. Her defect is usually fatal if not detected in the first few weeks of life but she was 4 ½ years old. We were told that this is unheard of and left the hospital wondering and questioning everything we did. At one of her first cardiology appointments I had a doctor take my hand and look me in the eye saying, “Mom you did not do anything wrong to cause this. By the time you heard her heartbeat for the first time, her heart already had this defect.” These words still echo in my heart. On October 17, 2011 we set out for the hospital and it was the longest ride of my life. From the backseat my beautiful girl called for me and as I turned around and our eyes locked her words got me through the day: “Mommy today is the day they are going to fix my heart and I am going to feel all better.” We turned our beautiful girl over to an amazing team that afternoon. As they wheeled her away, the most wonderful nurse looked at my husband and I and said to us “I will protect as if she were my own.” 7 ½ hours later she kept that promise and we saw our little girl with tubes, needles and hoses everywhere, but she was out and doing well. The relief in my heart and mind was indescribable.

Rayna is now 6. She is stronger inside and out and continues to be our driving force to find the beauty in this world of heart defects and doctors appointments. As each appointment nears we still wait with excitement to hear her heartbeat, just like we did the first time.

Rayna’s heart is mended but we are forever changed. The sound of that heartbeat is priceless.

Nicholas Basken

Nicholas Basken

While looking for a “pre-computer crash” photo of my kiddo with CHD, I came across his pre- and post-op records. Phrases like no femoral pulse, severe-misshapen artery, critical status, brings me right back to those horrific first days of Nicholas’s life. Those are words and feelings that no parent should ever experience. As my kiddo ages, it becomes easier and easier to put aside those memories. But, it still remains just as important to own our story, our experience, and use it on behalf of those who can’t.

Here’s our story: “Are you sitting down? Your baby has a serious heart defect.” This phone call was supposed to be my mother, congratulating us as we brought our newborn baby home for the first time. Instead, it marked the beginning of a nightmare which resulted in 3 hospitals, a helicopter ride and heart surgery, all in the first 3 days of Nicholas’ life. Nicholas was born with a serious heart defect called critical coarctation of the aorta, a severe narrowing in his aorta cutting off blood flow to the lower half of his body.

There were no signs of the ticking time bomb during any of his newborn physical exams. A few unusual readings of a blood pressure screening prompted an echocardiogram. However, the results weren’t available until after we were discharged home with our seemingly healthy baby. The brief phone call with the pediatrician left us with many more questions than answers. We were instructed to bring Nicholas to the area children’s hospital immediately, bypass the registration desk and go straight to the ICU, our next indication that something was seriously wrong. Once there, the doctors tried to give Nicholas some medicine to buy him time. Instead, the medicine slowed his breathing and Nicholas was placed on a ventilator. The wires and tubes were almost unbearable. It would be two days before I could hold my baby again.

Further testing indicated that Nicholas needed surgery, as soon as possible. But, there wasn’t an available surgeon at the Children’s Hospital. So, his limp little body was placed in a transport incubator and he was flown to the major children’s heart center 90 miles away. We followed the flashing lights in the sky, our baby. A few hours later, we placed Nicholas in the hands of the surgeon, clinging to hope that we would see him again. At this point he looked more like a science experiment than an infant. The seconds, minutes and hours ticked past. Eventually, Nicholas was returned to us, his heart mended, his body already healing. Fortunately, the road to recovery was much smoother than the downhill spiral we had just experienced. In just a few short days, a mere 7 days old, we brought our hero home to join his two older siblings.

The first few years of Nick’s life were filled with caution, fear, anxiety, and consumed by doctors’ visits. This was compounded by the fact that there were always 2 other siblings in tow. The inside of my minivan was decorated with the hundreds of “good patient” stickers the three of them had collected. These stickers meant Nicholas had made it another day.

Truthfully, Nicholas is a poster child for successful surgery. He has done so well, that the doctors’ visits have tapered off to a bi-annual cardiology visit. He is able to participate in sports with soccer and swimming topping his list, although hip-hop dancing is his favorite. Most days, it’s easy to forget that he has a serious defect. And then in an instant it all comes rushing back, like when his routine blood pressure is “funky,” or a seemly normal echocardiogram reveals “something unusual.” I catch myself wondering what his future holds. Until recently, children with severe heart defects didn’t survive and there is a huge gap of information about growing up with heart defects. There are still more questions than answers: How? Why? What’s next? No one really knows. I do know, that I will do everything I can to make sure he lives a long and healthy life.