2021 New England Congenital Heart Walk

Noah's Knights

Our team is raising critical funds for congenital heart defects! Congenital heart defects are the most commonly occurring birth defect, affecting approximately 1 in 110 babies born, or a child born every 15 minutes. Congenital heart defects are the leading cause of birth-defect related mortality.  Children who survive with CHD require life long care and monitoring.

We walk to honor heart warrior Noah!  Noah was born with a critical CHD called Hypoplastic Left Heart Syndrome (HLHS).  The left side of Noah's heart never developed properly and does not function.  Noah needed open heart surgery to save his life when he was only three days old!  Noah spent eight weeks in the hospital before being able to go home for the first time.  Noah had a second open heart surgery at four months old and was in the hospital for about a week.  Noah had his third and final planned open heart surgery when he was two and half years old.  Noah spent about seven weeks in the hospital recovering from that surgery.  In addition to three open heart surgeries, Noah has had five heart catheterizations and also a gtube placement surgery.    

If it wasn't for research, Noah would not be here with us today.  Research is what has made possible the three surgeries that Noah needed to have a chance at life.  Despite this, the surgeries Noah did have are not perfect and are not a CURE; they are just a band aid.  Noah will most likely need another surgery or heart transplant in the coming years; it is unknown when this would be.  As such, Noah requires frequent check ups with his cardiologist to monitor his heart function. 

Due to his CHD and long term hospital stays, Noah also has global developmental delay.  Children with CHD are at a higher risk for developmental delays and ADHD.  Research has helped doctors to understand this and come up with better ways to treat children with CHD in ways to deter or minimize the impacts of CHD on development.  Noah is followed by a cardiac neurodevelopment program, which has been essential in helping getting Noah the therapies that he needs to thrive.  Noah receives speech therapy, occupational therapy, physical therapy, and feeding therapy multiple times per week!

Since there is NO CURE for CHD, the future for Noah is very unknown.  But with research, we have hope that better treatments and procedures will be developed for children like Noah so that they have brighter futures and live longer, healthier lives!

Funded research is making a very big difference in the lives of CHD patients, helping to reduce incidences and increase survival, longevity and quality of life. Research has made a very big impact, and with survival and longevity increasing, even more research is needed to help address lifelong challenges that CHD patients will face. Every dollar in support of The Children’s Heart Foundation helps to further their mission: to fund the most promising research to advance the diagnosis, treatment, and prevention of congenital heart defects. 

Please support our team by making a donation, joining us for the virtual Congenital Heart Walk, or both!

Thank you!

Sincerely,

Noah's Knights

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