Lily's Story

We are pleased to introduce you to the Kohl family and Lily’s very inspiring and hopeful story.

 

Two days after her 20 week ultrasound, Brennan and Renee Kohl received news no parent ever wants to hear. The doctor called with a devastating diagnosis — their baby, Lily, was showing signs of a serious congenital heart defect.
 
Despite the odds, Lillian May Kohl was born Tuesday, February 8, 2011. And according to her parents, she arrived with a full head of black hair like her dad and chubby cheeks like her mom. She is their perfect angel.
 
Lily’s first few days in the world were spent underneath lots of tubes and machines but even then it was clear she was a fighter. Her technical diagnosis is long and complicated but what it boils down to, is Lily has a single ventricle heart.


Her next four months of life were spend between the NICU, PICU, and PSHU at Hope Children's Hospital in Oak Lawn and during this time she endured one closed heart surgery, two open heart surgeries and one stomach surgery. Although Lily is doing extraordinarily well, she requires at least one more open heart surgery in early 2013.

 
One generation earlier, Lily’s condition would have been fatal. Children born with a single ventricle did not survive more than a few days after being born because the surgeries performed to save children like Lily did not exist. The first successful Norwood operation was performed in 1981, but the success was just that... the FIRST. Over the years, the survival rates and life spans of those with single ventricle hearts have greatly improved, however surviving single ventricle adults past their early twenties are rare.

Years and years of research and advancing surgical techniques led to these increasing survival rates but these surgeries are not a cure. They are palliative, meaning they are performed to improve the quality of a person's life and help the patient live as long and as comfortably as possible.

Even though, Lily only has one ventricle to pump blood to both her lungs and body, thanks to life saving research Lily was able to celebrate her 2nd birthday recently. With your help Lily and other children with her condition will be able to celebrate many more birthdays. But there is still much more work to do!

The American Heart Association has funded more than $3.4 BILLION in cardiovascular disease and stroke research since 1949. Without such research, the surgeries used to save Lily would not exist. With further research, a cure might be a possible.


Thank you for your support for Lily and for the American Heart Association. Your efforts are greatly appreciated.

 
Best wishes,

 

Your 2013 Metro Chicago Heart Walk Team

P.S. Don’t forget to sign up to follow Lily’s story by liking American Heart Association Chicago’s Facebook page. 


Need help or have questions? Contact us at  chicago.heartwalk@heart.org or 312-476-6666.