Red Balloon 4 Heart Defects

04/22/2026

Very cool!

In a groundbreaking stride toward addressing the dire scarcity of therapeutic options for pediatric patients suffering from severe cardiac dysfunction, researchers at the University of Bonn have

04/01/2026

Jumping for joy over this news! This is going to be key to the quality of life for people with single ventricles.

“Historically, the Fontan procedure marked a paradigm shift by enabling survival of patients who would otherwise face early mortality. However, decades later, the medical community confronts the unintended consequences of this complex physiology. This new initiative underscores a shift from life preservation towards life optimization — transforming reactive management into proactive, precision healthcare tailored to this vulnerable population. The vision is to create a sustainable ecosystem that encourages translational research from bench to bedside, accelerating scientific discoveries into clinical practice.”

In a landmark initiative poised to transform the clinical landscape for patients born with single ventricle heart disease, the American Heart Association (AHA) and Additional Ventures have announced a

03/25/2026

This is really exciting news! Thank you CHF!

The Children's Heart Foundation is partnering with the Izak Szymczak Research Fund to support research that focuses on durable mechanical support in patients with single-ventricle congenital heart disease. ❤

The 2025 Izak Szymczak Research Fund Award​, administered through The Children’s Heart Foundation​, has been awarded to Dr. Mark Rodefeld (Indiana University) for his research on, ""Fontan Pump: Wireless Charge and Control System Development"".

Dr. Rodefeld’s work aims to move the Fontan pump closer to full implantability by developing a wireless charging, control, and monitoring system—eliminating external hardware and helping improve quality of life for patients while easing the daily burden on families and caregivers.

Together, we’re investing in research that brings hope and transforms care for CHD patients.

03/05/2026

Hot Topics in Congenital and Pediatric Cardiology in the Year 2025 Feb 23, 2026   |  Kamel Shibbani, MD; Lasya Gaur, MD; Tarek Alsaied, MD, FACC Expert Analysis Print Font Size A A A On this page: Resources Quick Takes Multiple 2025 guideline updates reshape pediatric heart failure, pulmonary hy...

02/11/2026

02/09/2026

02/08/2026

Sharing my Elliott’s story in the hope
That it helps another family. He is now 18 and a senior in high school.

Part 2:

Elliott had the second repair, the Glenn at 9 months old. He had grown beautifully and was strong. The surgery went well. No major complications and we were able to come home a couple weeks later. He would stay in the Glenn circulation for 6 years. The philosophy of his cardiologist was, the minute you do the Fontan (3rd surgery) you start the countdown to transplant. So he left him alone to grow. He did beautifully during those 6 years. His O2 saturations were in the low 80’s but he managed. He was very active and a typical boy although when he would run a distance he would need to squat (seems to be the position they all naturally take) and catch his breath and then take off again. It was all normal to him so he never questioned it. He did well in school, no accommodations except to allow him to catch his breath when needed and if he wasn’t feeling well the nurse would first check is O2. He didn’t have any out of the normal sicknesses and was pretty healthy during that timeframe.

02/07/2026

I just read a post from this young man’s mother. Kolt was born with hypoplastic left heart syndrome. He is 24 and lives in Nashville working by day as a guitar craftman for Gibson Custom Shop (how cool Is that?!) and as a singer/songwriter by night. Whether you have a child with a CHD or have a child whose hospital bed you’ve sat vigil next to, I think you’ll appreciate Kolt’s recently released song, “Bedside”written from the point of view of his parents during his hospitalizations.

Made up of footage shot entirely on a camcorder over 20 years ago, the Bedside official video tells the story of my first open heart surgery at the Universit...

02/07/2026

Sharing my Elliott’s story in the hopes that it will help another family. Elliott is now 18 years old and a senior in high school.

Part One:

Elliott’s story began at a 20 week ultrasound. During the ultrasound it was evident that the tech was spending an inordinate amount of time looking at the heart but of course never said anything. A couple weeks later I’d receive a call giving the report, “Appears to be a single ventricle heart”. I was then transferred to Pediatric Cardiology in Syracuse. Of course there was no great urgency on their part to get me in and I had to wait 3 weeks. Finally the day of the appointment came. I was praying that it had all been a mistake but unfortunately it wasn’t. The cardiologist said, “As heart defects go, this is as bad as it gets, except that we do have some options.” He then went on to outline the 3 staged surgical repair that is currently the standard of treatment for single ventricle hearts. He said the baby would have surgery very soon after birth (the Norwood procedure). Then, if he survived he would have a second surgery somewhere around 6 months (the Glenn) and then a third surgery (the Fontan) down the road. With each surgery the chance of survival increased so once through the Norwood he had a better better chance of surviving the Glenn. After explaining the surgical options he said, “These defects are so severe that we would support you in choosing to do nothing. We would simply make him comfortable and let him pass”. For us, that was never on the table, however I have met people who made that terribly difficult decision and I place no judgment.
The pregnancy went on quite normally except that I was transferred to a high risk OBGYN in Syracuse and would continue to see the cardiologist. They explained as long as he was inside me, he was stable. He grew to be my biggest baby at 8.14 lbs and 21.5 inches long. He was given prostaglandin via a small line into his bellybutton to keep the patent ductus open until he had surgery. That first surgery took place at one week of age. Elliott was in the hospital a couple weeks post op. He developed chylothorax and was subsequently put on low fat formula. The chylo slowly resolved and we were able to go home where he thrived. He would have his second surgery at 9 months of age.