Caleb Sams

After what appeared to be a picture perfect pregnancy, we were so excited to head to the hospital for our first child, Caleb, to be born.  This day, which began with excitement and joy, would turn into a roller coaster of emotions.

After hours of labor, it was apparent that Caleb was in trouble. His heart rate kept dropping.  Finally his heart rate dropped and would not come back up.  I was rushed back to do an emergency cesarean. When he was born, Caleb’s oxygen saturation never went above the 60s. A normal person’s oxygen saturation is usually above 95.  I kept asking to see him and the nurses kept replying, “we just need to pink him up a little.”  As naive new parents we accepted this explanation.  However when they finally showed him to me, they told us something was wrong and he would need to be taken back to the special care unit.  After a couple of hours of trying to diagnose the problem, it became clear the complication was related to Caleb’s heart and he would need to be transferred to Cincinnati Children’s Hospital.

Caleb was brought to me in an incubator where I was finally able to touch his hands and feet.  While I tried desperately to soak in these brief moments with him, the transfer team explained to us that something was wrong with his heart and that he would require open heart surgery most likely within the first week of his life.  My husband then went with our son, while I had to remain at the birthing hospital.  At Children’s Hospital they diagnosed Caleb with a Congenital Heart Defect called Transposition of the Great Arteries.

Only three days later our sweet newborn son had open heart surgery to save his life.  Kissing our son and sending into an operating room with doctors and nurses we had only just met the in the last couple days was one of the most excruciating moments of our lives.  After hours and hours the surgery was finally complete.  Caleb did well in the surgery and recovered quickly with very few complications.  

Looking at our son now still amazes us sometimes.  He has needed some extra help in areas because of developmental delay and he does have a couple complications with his heart that his cardiologist is monitoring.  But over all Caleb is a typical little boy.  He plays basketball, loves playing outside, and can tell you anything you want to know about his video games.  Our miracle boy fills our lives with joy and laughter.  He has changed our lives forever and reminds us every day to focus on what is truly important.

Owen

Owen was born on July 16, 2012, a healthy baby boy. He passed all his newborn tests and we were both sent home with the elation of new parents.

After a few weeks, I noticed that nursing was getting quite difficult, as Owen would nurse for only a few minutes, then fall asleep. As soon as I would burp him, he’d wake up and cry because he was hungry. I was literally nursing him every 45-90 minutes.

I had a gut feeling that something just wasn’t right. I took him to see our pediatrician and she discovered he was not gaining any weight, approaching failure to thrive. She suggested I give him a bottle of pumped milk after nursing and come back in a week, which I did, and he had gained over a pound! At that point, we just assumed I wasn’t making enough milk for him.

Our pediatrician then did a once over on him, since we were so close to his 6 week well child check up. It was then she heard a slight heart murmur. It was so slight she wasn’t even sure she heard it, but she insisted that we go see a pediatric cardiologist.

Miraculously, we were contacted by the cardiologists office the very next day, asking if we could come in due to a cancellation. We decided to go in, thinking this would be a quick visit. Well, we sure were wrong! After an EKG and an ECHO, it was determined that Owen had aortic stenosis and coarctation of the aorta. It was so severe, they couldn’t detect a pulse on the bottom of his feet!

We were immediately referred to Motts Children’s hospital in Ann Arbor, MI and surgery was scheduled for 5 days later. We were in shock as we headed to Ann Arbor, but somehow we both survived the 5 hour open heart surgery. He had the Ross procedure done to correct the stenosis. We were told that his current conduit pulmonary valve will need to be replaced again around his 5th birthday.

We are so very grateful to Dr. Ohye and his team, as well as the nurses at Mott’s for saving Owen’s life, and putting up with crazy, uptight parents full of questions every 5 minutes! So far, Owen has had a great life- full of energy and not showing any signs of slowing down! He has his yearly cardiologist appointment in February, where it will be determined when or if he will require another open heart surgery to replace his conduit pulmonary valve.

Congenital Heart Network

The Pediatric Congenital Heart Association (PCHA) is thrilled to announce the creation of our newest program: the Congenital Heart Network.

As we continue to build upon our mission to Conquer Congenital Heart Disease, we recognize the importance of meeting the needs of patients with congenital heart disease (CHD) and their families every step of the way along their journey. Expanding our programming from national activities to local ones is a critical next step. The Congenital Heart Network aims to bring patients with CHD and their families together to provide hope and support to every member of this ever-growing community across the country.

One of the Pediatric Congenital Heart Association’s strategic goals is to develop the foundation for a single congenital heart disease organization to meet the comprehensive needs of those impacted by CHD.

The Congenital Heart Network is the first step toward accomplishing this goal.  The Network will meet the many needs of the CHD community through a single, larger organization.  This program provides new collaborations, significant strength in numbers, and an infrastructure that enhances our ability to improve the lives of those living with CHD.

In addition to virtual, peer-to-peer support communities, the Network will consist of state-based chapters empowered to execute local programming providing education and support directly to CHD patients and their families.

We have been working with a team of committed volunteers with extensive experience in running and managing a national peer support network and look forward to a staged roll-out of this new important program.  As the program continues to grow, I encourage you to communicate with your local support programs to assess whether participation in the Congenital Heart Network would be advantageous to them as we offer some of the following benefits:

  • Provision of tax-exempt status under a group 501(c)(3) exemption;
  • Support in incorporation and annual filing requirements
  • Web page dedicated to information about the Network and contacts;
  • Employment of staff dedicated to the Congenital Heart Network;
  • Educational webinars to assist with management of groups;
  • Access to congenital heart related educational materials to disseminate to local network participants.
  • Additional program materials such as care package essentials

 

We are very excited about this tremendous opportunity to grow the voice of congenital heart disease while better meeting the needs of individuals with CHD and their families.  Together, we are Conquering CHD!!!!

Stay tuned for more information about how individuals can join the Network as we build our peer-to-peer structure.

Interested in learning more about forming a Chapter in your state?

Please contact: Amy Basken – Director of Programs: abasken@conqueringchd.org

or

Melanie Toth – Director:  mtoth@conqueringchd.org;

Megan Setzer – Director: msetzer@conqueringchd.org

 

PCHA 2017 Policy Update

 

Looking ahead to 2017, the Pediatric Congenital Heart Association has spent the last several months developing strategic policy goals that address the needs of the congenital heart disease community, including research, data collection and public health policy.  In the next weeks, along with finalizing these goals, we will be meeting with organizational partners, our legislative champions and advocates, like you, to establish next steps to address these key policy issues in the coming year.

 

 

Our stories matter.  What you can do now:

1) Begin to build relationships: Identify who represents you and learn about them.  Listen to what is important to them.

2) Open the lines of communication – Collect your lawmakers’ email addresses, phone number and contact information for the district office near you.  For newly elected officials, this may not be available until January; however, many have social media contacts via FB and twitter.

3) Share your story.  Introduce them to your world of chronic illness.  Let them know that health issues matter to you.

Completing these steps will lay the ground work for effective advocacy in the months ahead.

We, also, urge you to consider attending the Congenital Heart Legislative Conference in Washington D.C. on March 1-2.  Here you will:

  • Learn about current CHD activities in Washington D.C.
  • Learn how to effectively tell your story.
  • Connect with other CHD patients and professionals.
  • Share your story with your members of Congress.
  • Inform your legislators about the key policy issues including the need for research and data collection.
  • Make a difference on behalf of those living with CHD!

As always, we are inspired by the strength of the millions of people impacted by congenital heart disease.  By coming together, we are conquering CHD!

We’re Partnering With The Mighty!

We’re thrilled to announce a new partnership that will bring our resources in front of The Mighty‘s wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site.

Your story matters.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

We’re dedicated to helping people with congenital heart defect in their lives. With this partnership, we’ll be able to help even more people.

Here’s an example of the great stories you will find on The Mighty: https://themighty.com/2016/07/congenital-heart-defect-man-makes-promise-to-be-an-advocate/

We encourage you to submit a story to The Mighty and make your voice heard!