Hayden's Story

Hayden’s Hope … How We Got Here

39 days.  39 days is how long we had our baby boy, Hayden.  On August 12, 2011, Hayden Michael Nowkhah was born -- the picture of perfect health.   Six days later, Hayden was back in the hospital with a 102 degree fever.  A virus caused that fever.  That same virus attacked little Hayden's heart.   His perfect health was gone and within a matter of days, Hayden was at the top of the heart transplant list.   How could this happen to a baby that had not one single health concern at birth?   There is no answer. 

While waiting for a donor heart, Hayden endured three surgeries and two systems of risk-laden heart support.  On September 17th, one of those risks was realized.   Hayden suffered a stroke.  And testing showed that there was incredible damage inflicted on his brain.  It was significant enough that doctors told us he had a 1% chance of living anything near a normal life.  Walking and talking were far from realistic possibilities in his life.   And that stroke would take Hayden off the transplant waiting list. 

Hayden was not going to get the heart he needed to survive.  And with that, we made the decision to let Hayden go.  He had suffered so much.  We couldn't let him suffer any more. 

This story may have ended differently had more parents been willing to donate their children's organs.  But when most parents are faced with the death of a child, organ donation does not cross their minds.   This is understandable but we hope that telling Hayden's story might begin to change that.  The unavailability of organs in the pediatric population leads to numerous deaths that could be deemed "unnecessary." 

We have started "Hayden's Hope" to raise awareness for pediatric organ donation.  In addition, Hayden's Hope, working in conjunction with the Children's Organ Transplant Association (COTA), will raise money to cover transplant-related expenses in honor of children awaiting transplant.   Medical bills, travel costs to and from transplant centers, lengthy stays away from home and in many cases, job loss affects transplant families and crushes them financially.  COTA families receive 100% of the money raised through Hayden's Hope.   It is our hope that Hayden's story inspires others to help children achieve the successful transplants they deserve so that they can live the life they were meant to live. 

Thank you from the bottom of our hearts,

Dari and Jenn Nowkhah