Matthew's Heart Story

By: Janeen Kokodynski

Matthew came into this world on June 10, 2005.  Some would say our son’s story did not have a happy ending, we don’t see it as an ending at all.  We see his life and death as a beginning. Our story of life and loss begins on January 17, 2005 when our third child, Matthew Andrew Kokodynski, was diagnosed at 17 weeks in utero with a complex congenital heart defect; double inlet left ventricle. 

The next couple of days after Matthew’s diagnosis were filled with a lot of emotions. Exhausted and emotionally drained, we continued our research for a surgeon and a hospital to find the best care for our son. We needed a location that made sense for our two other small children and my husband. During my research for a doctor and a hospital is when I first heard about the Children’s Heart Foundation.

As a family, we made the decision to move me to California at 34 weeks, give birth at City of Angels Hospital and have Matthew have his heart repaired within days by Dr. Vaughn Starnes at Children’s Hospital of LA. 

Three days after Matthew was born, he had his first of three scheduled open-heart surgeries. Matthew did well during his surgery, although he definitely had his share of post-surgical complications. After a month of Matthew being in the Cardiac Intensive Care Unit, I had my first conversation with the doctors and nurses about transferring Matthew to Phoenix Children’s Hospital so we could be closer to home since he was making steady progress. As we started to make “our plans”, I sadly came to realize that God had a different plan in store for us.

On July 12, 2005 Matthew passed away. The day that Matthew passed away will forever be embedded in my memory and play like a movie on a movie reel. I have never experienced what it’s like to have something happen to you in slow motion, until that day. I can remember an unknown doctor telling me that the option for doing another surgery was not feasible. “There was nothing he could do. He was sorry.” 

I held and rocked my son for the first time since he was born without any tubes or lines in his body. I spent hours kissing and snuggling him until his dad arrived in California and said his goodbyes. I will never forget the ache in my heart leaving our son at the hospital and the long drive back to Arizona to plan his funeral. I would never wish that pain on anyone.

Our son never made it home to Scottsdale, AZ. Instead, he went to a different home. A home where he is complete and whole and where our Lord always intended him to be. We know that Matthew is safe and is cared for. Our hearts are at peace.

My first phone call to the director of CHF was the start of a new chapter in our life as grieving parents. For fifteen years we have been raising money for CHF. We helped to start “A Heartfelt Affair”, the AZ Chapter of the Children’s Heart Foundation and the Arizona Congenital Heart Walk. Even though these events are no longer in existence, they were successful and helped to raise well over $500,000 for CHF.

Today I am the proud owner of two businesses that help to support CHF’s mission. Koko’s Candles and A Box of Comfort. In 2017 I combined my love of candle making with my commitment to CHF and Koko’s Candles was born. A percentage of my proceeds from my candle sales gives back to CHF.