Every year, 100,000 babies don't make it to their first birthday because of CHD.
Levi Henry Chackmak | Heart Warrior of the Week

Our latest Heart Warrior of the Week is Levi Henry Chakmak! Levi is very special to the Save the Heartbeat family and we are honored to share his story with the world: at a 13-week ultrasound, Doctors noticed a defect in Levi’s growing heart, he was officially diagnosed with Ebstein’s Anomaly at 17 weeks gestation.  He was born five weeks early and has shown a resilient, fighter spirit ever since.  Throughout his battle with CHD, Levi has undergone two open-heart surgeries and spent about five weeks in the hospital.  Due to his condition, he will have to have future surgeries in order for his heart to be able to keep up with his body.  Levi’s parents describe him as sensitive, strong, brave and kind, saying:

Levi was born five weeks early and hasn’t stopped fighting.  He is sensitive and kind and his heart his perfect even with an imperfect valve.  We love him, support him and fight every battle as a family.

CHD support

About Ebstein's Anomaly

It is a malformed heart valve that does not properly close to keep the blood flow moving in the right direction.  The tricuspid valve (the valve between the two chambers in the right side of the heart) of a patient with Ebstein’s Anomaly sits lower than normal in the right ventricle, and the tricuspid valve’s leaflets are abnormally formed.  Because of this, the valve doesn’t work properly, so blood may leak back through, making the heart work less efficiently.  Ebstein’s Anomaly may also lead to enlargement of the heart or heart failure.  Symptoms include:

  • Shortness of breath
  • Fatigue
  • Swelling in the legs
  • Heart palpitations
  • Bluish skin coloration from low oxygen levels

While very serious, this is one of the more treatable forms of CHD. Treatment options include medications and surgery.  Ebstein’s Anomaly is very rare, occurring in just 1 out of every 10,000 babies, affecting boys and girls equally.

Source: mayoclinic.org

ebstein's anomaly

congenital heart disease support group

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