MY BRAVE LITTLE MAN, MY HERO, MY SON

Kyle Thomas Wathen was born on May 30, 1996 at 4:56 pm in Paducah, Ky. He weighed 7 pounds 6 ounces and was 19 inches long and he changed many lives forever. Kyle was born with Hypoplastic Left Heart Syndrome which means the left atrium and left ventricle did not develope in utero therefore Kyle only had half of a functioning heart. Approximately 1 in 25,000 are born with HLHS. Immediately following his birth we knew something was wrong. The doctors in Louisville, Ky at Kosair's Childrens Hospital were called and a transport team was sent to get Kyle. When they arrived late that night they told my husband and I he either had a heart problem, lung problem, or he had a serious infection. In the wee morning hours we were called and told that our precious son had a rare heart defect and we had two options, let him go or do a three stage surgery. Kyle had approximately a 20% chance of making it off the operating table and only a 50% chance he would survive because he was one of the sickest HLHS babies the doctors had seen. We took our chances and never regretted it. Kyle had the Norwood done when he was 15 hours old, the first of the three surgeries. I was released AMA the next day and my husband and I drove to Louisville. We were told to call at a certain time to see if Kyle made it out of surgery because there was a real possibility that they would not be able to get his heart restarted so at a gas station I made the call from a pay phone to find out if my son was still alive. Kyle did pretty well after surgery. His chest had to remain open for three days after surgery. He had a difficult time getting off the respirator which caused him to be in the hospital longer that most kids who have had the Norwood but after one month we took Kyle home. When Kyle was 7 months old he had the bi-directional glen and again was in the hospital for a month. Kyle was 3 years old when he had the Fontan. This was the last surgery and because it changes the hemodynamics in his body he was in the hospital a little over a month. Pleural effusions are very common after the Fontan. Approximately six months later during a routine heart cath. we learned that the vessel that was created in the Fontan to connect the lower extremeties directly to the pulmonary artery had become blocked but that amazingly Kyle had grown his own vessels and was sustaining himself pretty well. The risk of having another surgery was greater than having him continue sustaining himself on his own vessels so the doctors decided against it and he was closely monitored afterward. Fast forward to the age of nine. Kyle was filling up with fluid in his abdomen. We took him to Louisville on November 11, 2005 to see his cardiologists and he was immediately hospitalized. Later that week he was diagnosed with Protein Losing Enteropathy. Kyle's vessels were leaking fluid and proteins into his abdomen which also compromised his immune system. PLE is caused by high pressures in the heart and is directly related to the Fontan.  Kyle's pressures after his Fontan were very close to normal so if his Fontan had not become blocked then he would not have developed PLE.   Only 1,500 kids in the US develope it each year. Because PLE is rare and very new to the medical community not much is known about it and there aren't many treatment options. We tried medications but they didn't  work so on November 22, 2005 Kyle had his fourth open heart surgery to correct the Fontan and to put in a fenestration. Kyle went to the ICU following his surgery and he never left. The surgery hadn't exactly worked and many things were tried over the next four months but nothing worked. Kyle passed away on March 3rd, 2006. There are many things I could tell you about that four month stay in the ICU but I just can't right now. It's too hard.