New England Congenital Heart Walk

Indie with Echo the Owl
Indie with Echo the Owl

Indiana's Heart Crusaders

Hello!  We are the Sakash family and welcome to our team page, Indiana's Heart Crusaders!

 

Indie was born with several congenital heart defects:

- Conoventricular Ventricular Septal Defect: a large 7.5 mm hole just below the pulmonary aortic valves of her heart.  What this hole does is cause blood to flow from the left ventricle into the right ventricle and into the lungs, making them "wet" with extra blood. The extra blood in the lungs overworks the lungs and the heart, causing symptoms of rapid breathing, excessive sweating and retractions.

Pulmonary Valve Stenosis (mild case): A narrowing of the opening of the pulmonary valve.  This makes the right ventricle work harder to develop enough pressure to push blood through the narrow opening in the valve.

- Patent Foramen Ovale: A hole in the tissue between the left and right upper chambers of the heart.  This was found during her open heart surgery.

 

Although her surgery was scheduled for when she was 6 months old, she was deemed failure to thrive (poor weight gain, lack of appetite, struggling to breathe) and heading into congestive heart failure, which meant her heart would not be pumping efficiently in June 2019.

On July 22nd, at 3 months old, Indiana had her (successful) open heart surgery at Mass General surrounded by a team of Boston Children's Hospital medical professionals.  She stayed in the Pediatric Care Intensive Unit for 4 days, passing every milestone with flying colors and we were home after day 5.  Since then, Indiana has been absolutely THRIVING and she is eating well, gaining weight and living her best life with us.  We are forever grateful for the team at Mass General and Boston Children's Hospital for giving us the chance to live our life as a family of four.

 

Despite medical interventions such as open heart surgery and medications, CHD is forever and there is no cure for it.  Indiana will be seeing a cardiologist, recieving various medical tests and keeping a close eye on her tiny ticker for the rest of her life.  This is why we want to raise awareness about a grossly underfunded medical issue.  Congenital Heart Defects are the NUMBER ONE MOST COMMON BIRTH DEFECT, as well as the number one most common cause of infant death due to birth defects.  There are so many babies, teens and adults losing their battles to CHD.  We need desperately need more funding on a medical issue that is still so "gray" in the medical world.  

 

Want to join us? BECOME A HEART CRUSADER! Sign up on our team and walk with us May 2020!

Want to support our cause? DONATE! Every dollar counts. Every. single. penny. It could save a life.

How else can you help us? SPREAD THE WORD! Share this page.  Raise awareness.

 

We thank you for all of your support on this wild ride we've had since the day Indiana was born.

We love you all. 

 

Sincerely,

The Sakash Family 

 

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