My Story, My Life

Our journey began in November of 2005. At 18 weeks gestation, to our great dismay, our baby boy was diagnosed as having a single ventricle heart and abdominal situs inversus. As the pregnancy progressed, our baby grew steadily, but so did his list of diagnoses. His prenatal echocardiograms indicated a need for emergent open heart surgery on the day of his birth. We were prepared to do what was necessary for our son, so in anticipation of his birth, we moved back to California from Arizona, to seek the specialty cardiac services available at Lucile Salter Packard Children's Hospital at Stanford.

Ethan Rey Martin was born on April 13, 2006. He came out kicking and crying furiously, and surprised the medical team with the level of his stability. We were given a few precious minutes to hold him before he was walked to the NICU in his father's arms for a thorough evaluation. The echocardiogram performed immediately after birth mirrored what they had diagnosed in-utero. Ethan had a condition known as heterotaxy or asplenia, which included multiple complex cardiac defects (single right ventricle, hypoplastic left ventricle, common atrium, complete AV canal, PDA, pulmonary atresia, and TAPVR type III). Additionally, his abdominal organs were reversed and he had no spleen. Because his pulmonary veins were not properly attached to his heart, and their obstruction would only lead to rapid deterioration of his condition without immediate intervention, they needed to proceed with the emergent surgery that we were forewarned of.

We reluctantly kissed Ethan goodbye as he was rolled into the operating room at just 4 hours after birth to have a BT shunt placed and a TAPVR repair (total anomalous pulmonary venous return repair). The BT shunt provided a way for blood to be sent to the lungs to get oxygenated, and the TAPVR repair connected the pulmonary veins to his common atrium so that oxygenated blood from his lungs could return to the heart.

Ethan was strong during his surgery and continued to demonstrate his strength and will during a tumultuous post-operative period. He fought instability of blood pressures and cardiac rhythms, fluid overload, and a laceration of his heart by a pacing wire. We rode a roller-coaster of emotions dictated by the ups and downs of his progress. Many quiet hours were spent at his bedside as he recuperated, but we celebrated the times when he lay awake and acknowledged our presence with a squeeze from his tiny hands.

Ethan started to show real progress in his second week of life and we thought he could possibly beat the odds against him. But unfortunately, his condition again deteriorated. A cardiac catheterization showed that the pulmonary veins which had previously been repaired had re-narrowed, a condition known as pulmonary vein stenosis. Ethan had battled furiously and valiantly every day of his life, and as much as we longed for him to stay, it was now time to let him rest.

After a long 23 days, we were finally able to hold our son again for the first time since his birth. Ethan opened his eyes one last time to look at us and say goodbye before his passing, then left this world at 10:50pm on May 5, 2006, while embraced in Mom's and Dad's loving arms.

Always to be remembered for his courage and strength against adversity, his struggle is over. Ethan is at peace.