Single Ventricle Heart Disease

A Simplified Description

The heart is designed to have four main chambers: two smaller ones called atria and two larger ones called ventricles. The two chambers on the right side of the heart receive and pump blood to the lungs to pick up oxygen. The chambers on the left side receive the freshly oxygenated blood and pump it out to the brain and body to keep it all working!

In single ventricle heart disease, a baby is born with a malfunctioning or underdeveloped ventricle, sometimes with a hole in the wall separating the chambers. This causes a mixture of low-oxygen blood (returning from the body) and oxygen-rich blood (from the lungs). As a result, less oxygen is delivered to the brain and body, leading to symptoms such as cyanosis (blue lips and fingers). Children with this condition often have other heart issues, including valve defects.

Unlike some other congenital heart diseases, single ventricle heart disease does not have a simple fix. These children often require multiple surgeries in the first few years of life to reroute blood flow and ensure adequate oxygen delivery to their brain and body. These precious children live with chronic low oxygen levels and must adapt to symptoms such as cyanosis, which can range from mild to severe. Cyanosis can lead to stunted growth and delayed development, and numerous medications are usually necessary to support their heart function before and after surgery.

In Iraqi Kurdistan, children with this condition do not have access to urgent surgery and the necessary follow-up care. Consequently, many succumb to their condition. Although the prevalence of single ventricle heart disease is approximately 5 in 100,000 births, each affected child is precious and deserves a chance to live a full life, however long that may be.

Elina’s Special Heart:

Elina’s journey is remarkable. Shortly after birth, she showed signs of cyanosis. Through a connection, she was brought to the Love Them All team for help. At around four months old, her first heart ultrasound revealed a diagnosis of single ventricle and pulmonary atresia (an underdeveloped valve preventing adequate blood flow to the lungs!).

During the ultrasound, her heart stopped, and was miraculously resuscitated by her cardiologist. Despite a prognosis of only weeks to live, she survived over a year with the support of her cardiologist and Love Them All.

However, without intervention, her condition continued to worsen, leading to her admission to a local pediatric hospital for stabilization. This was a deeply challenging and heartbreaking situation. Even though she was so sick and her heart was failing, there was a brightness in her eyes and an intelligence that was undeniable. Aware of the difficult road ahead, Love Them All persisted in seeking help for Elina, uncertain of the outcome. Things fell into place just in time, enabling her to receive incredible life saving care in a way that could only be explained as miraculous.

You can read about the journey that followed here:

Elina’s Surprise Journey to Italy and Music, Love, and Miracles: Elina’s Path to Recovery

It has been a hard road and YET – Elina has shown such fight and determination, has brought so much joy and love to all she meets, inspiring people all over the world who hear her story!

Despite it all, seeing her enjoy life and have an opportunity to be a child makes it all worthwhile and fulfils the Love Them All mission to stop and care for the one – no matter the circumstances and no matter the cost.

Resource: Boston Children’s Hospital
https://www.childrenshospital.org/conditions/single-ventricle-defects