Kylee's Story

Kylee was born with three heart defects.  She had dextrocardia which meant her heart was flipped on to her right side. She also had a third degree heart block which caused the top and bottom of her heart not to pump at the same time. Lastly, she had  Corrected Transposition of the Great Arteries which meant that the large artery was only pumping blood to the lungs, leaving the small artery to pump blood to her whole body.  Kylee was born via emergency C-section 3 weeks early and rushed straight to the NICU.  Four days after her birth, it was decided that she would need a pacemaker to help increase her heart rate. A few days later her pacemaker was placed and we went home. For the first two months everything seemed fine, until one night when Kylee was with my parents, she didn’t look well and obviously something was wrong.  We then rushed her to Joe DiMaggio Children's hospital.   

When we arrived at the emergency room, we had no idea how sick Kylee was. However, we soon knew the severity when we saw the emergency room team come together and work on Kylee, ultimately getting her stable enough to go to the Pediatric ICU.  The next day we were told that Kylee had cardiomyopathy, an enlarged heart, and no surgery could help her.  She had only one chance of survival, a heart transplant.  I was terrified for my daughter, but hopeful for her when the next day she was listed on the transplant list.  As you may know, the wait on the transplant list can be long and agonizing, both for the parents and the patient. Kylee though amazed the doctors with her progress, and to their surprise, after being intubated for 6 weeks, Kylee pulled out her own breathing tube and began to breathe on her own until her transplant one week later. Almost immediately after the transplant, Kylee bounced back and became a bright, happy, baby girl again.  She shortly began to eat on her own and to our joy, she was sent home and we were a family again.

Kylee would need monitoring and will be on medications for the rest of her life, but that is a small price to pay to have her with us.  We will always be especially grateful to our donor family for giving Kylee life, for they lost their angel to give ours a life.  Those parents are truly a blessing and we will be thankful to them everyday for our daughter’s life. 

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On May 22, 2015, Kylee earned her angel wings.  

During her four years with us, Kylee lived each moment to the fullest. She always had a smile on her face and brought so much joy to the lives of those who crossed her path. Kylee was an amazing spirit, wise beyond her years. 

Kylee was a fighter and a testament to what great medical care, like that at Joe DiMaggio’s Children's Hospital, can accomplish and as a way to pay it forward, Kylee was an organ donor. Her story though is just one of the many cases that occur every month at Joe DiMaggio Children's Hospital. My husband and I were blessed to have a support network of family and friends to help us, but other families are not so fortunate. The Hearts for Kylee Foundation was created not only to support pediatric cardiac families but also a way for our family to give back and honor Kylee as well as Kylee's heart donor.

Kylee’s smile and her mission will forever live on through The Hearts for Kylee Foundation.