Monday, October 28, 2013

Ethan's Story

Written with love by his father, Jeffrey, who felt he could not read it at the funeral service.  The story was read by his Auntie Megan.
Ethan Thomas K. was born as the first child to Jeffrey Wayne K. and Laura Ranae K. on September 30, 2013 at 4:15 PM.  He was 7 pounds 3 ounces and 21.5 inches long.  His short life ended at 5:37 PM the same day.
Ethan's middle name of Thomas was given for the first name of his maternal grandfather, Thomas Michael B., and the middle name of his paternal grand father, Jack Thomas K. Sr.
Ethan's story began at the 20 week ultrasound in May of 2013. Jeff and Laura learned their son, Ethan, had potential issues with his heart.  A fetal-echo-cardiogram confirmed Ethan suffered from Hypoplastic Left Heart Syndrome (HLHS) which is a diagnosis given to children with underdevelopment of the left side of their heart.  The diagnosis was dire but with three open heart surgeries and a heart transplant later in life, Ethan could be offered a challenging but rewarding life.
In an effort to support other heart moms and keep family updated, Laura paid forward the kindness of other heart moms by creating her blog,  Through the kindness of friends and family, Ethan's blog has more than 10,000 views with readers in many countries.
On July 22, Ethan's diagnosis took a turn for the worst.  The severity of being born without a left heart ventricle was further complicated by Ethan having an Intact Atrial Septum (IAS) or the lack of a hole between the top two chambers of his heart.  The IAS prevented his heart from naturally mixing his red and blue blood.  Each day Ethan grew, blood pressure built in his heart's left atrium unable to escape quickly enough causing slow damage to his tender lungs.  His doctors were concerned he would be unable to properly oxygenate his blood after birth.

Ethan had joined the ranks of babies with the most severe and rare of heart defects.  His case was reviewed by doctors at the cutting edge of heart surgeries across the country.  With the addition of a catheter surgery immediately after birth, Ethan was offered a 50% chance to survive initially and a 5% chance to reach the age of 5.
Ethan gave a glimmer of hope during the final month of the pregnancy.  His heart had grown a vein early on allowing his blood to mix and reduce the blood pressure in his left atrium.  The little decompressing vein appeared to be doing its job.

Ethan arrived at a full 40 week term on September 30th.  During labor it became apparent his little heart didn't have the strength to withstand any contractions.  He was born by C-section surprising the room with his ability to cry.

Our best hopes were that Ethan's blood saturation would be 50%.  In a show of hope, Ethan delighted everyone with oxygen saturation levels of 66% and an APGAR score of 8.8 out of 10.  After a quick hug to his mother and photo, Ethan was rushed to the surgery room through a gauntlet of 22 loving grandparents, aunts, uncles, and cousins showing every sign that he would pull through.
During surgery, Ethan's heart defect and damaged lungs moved more quickly than the diligent and careful hands of his surgeons.  The complexity of the surgery they were attempting was not able to be completed successfully during the short time Ethan lived.  He returned home to his Heavenly Father one hour and 22 minutes after his birth.  

Ethan's short life is an immeasurable blessing in strengthening the marriage, faith, and devotion of his parents.  He has tightened family bonds and inspired the faith in Christ of many.  His short life and passing has reminded his family of the kindness and charity still prevalent in our communities.


  1. This is so beautiful, Jeff and Laura. Thank you for sharing your experience and strength with all of us. We miss Ethan but are thankful for our eternal perspective that gives us comfort knowing Ethan lives on!

  2. He definitely is a beautiful little boy. The service that you gave him was very touching and a good reminder to me to cherish every moment and stay close to Heavenly Father. Jeff and Laura, you are inspiring to me and I am grateful to call you friends.