Help us ensure that no family navigating a medical crisis with their child has to go through it alone

Heterotaxy syndrome is a rare condition in which the body’s internal organs — like the heart, lungs, liver, and intestines — are not arranged in their usual positions. It often affects the heart and blood vessels, leading to complex congenital heart disease and other life-threatening challenges.

 

 

How It Affects Malachi

 

Malachi was diagnosed with heterotaxy with polysplenia, meaning:

• His organs are arranged abnormally inside his chest and abdomen

• He has multiple small spleens (polysplenia), which affects his immune system

• He also has serious heart defects, including:

• Anomalous origin of the right coronary artery

• Congenital bilateral superior vena cava

• Interrupted inferior vena cava

• Junctional rhythm

• Partial anomalous pulmonary venous return (PAPVR)

 

These conditions require ongoing care from specialists, heart surgeons, and advanced medical teams. Malachi has already faced multiple surgeries, hospital stays, and a journey that many families simply aren’t prepared for emotionally, physically, or financially.