Monday, August 17, 2009

Summary of Ethan's Journey

Ethan Skidmore, our fourth child, was diagnosed with Hypoplastic Left Heart Syndrome at 19 weeks in utero. We were told he had it very severe and would require a series of three surgeries to make him a “half-heart” baby. We were overwhelmed, but determined to see the course through and be there for our child every step of the way. At 27 weeks along Ethan developed further complications called Pleural Effusions (fluid around the lungs). We were told he may not survive. After being closely followed Ethan was carried to full term and his effusions were very small. He needed no breathing assistance at birth and looked like a beautiful healthy baby.

At 6 days old he had his first open heart surgery. The Norwood procedure with a Sano shunt. The Sano shunt was used instead of a BT shunt. Ethan had a surprise in surgery. He had a right sided aortic arch that went a did a full wrap (or ring) around his esophagus. He ended up with a trache from vocal cord paralysis from the ring repair. And shortly after surgery, his pleural effusions returned. He battled his way through multiple procedures and surgeries (w/ half a heart) and was able to come home at 9 weeks of age. At 11 weeks of age he was able to have his trache removed. His vocal cords were working again. We LOVED having him home.

When Ethan was 3 ½ months old he had his second open heart surgery, the Glenn procedure. This procedure is very dependent on strong lungs. Ethan’s lungs were questionable because of the unknown origin behind his pleural effusions. But he needed the procedure. He did well at first, but after 10 days his lungs could no longer tolerate the new pressures and he got an infection. His pleural effusions became worse than ever. To make a long story short, Ethan endured 2 more months of multiple surgeries and procedures. He put up a tremendous fight! Every time there was light at the end of the tunnel, other complications came. It was determined his heart and lungs were too sick. He would need a transplant. As we were exploring this new road we were about to journey down, our Ethan swiftly and peacefully left this life. We are better because of Ethan. He has touched many lives in his short journey on Earth. And we are grateful to the Eller Heart Center for their medical efforts and the frienships made during this period in our life.