Matthew was born on Sept. 17, 1999 after an uneventful pregnancy. Even after birth we had no idea that anything was wrong and went home after two days in the hospital. On the eighth day I started to notice that he was breathing very fast, even when in a deep sleep. I called the hospital nursery and explained what was going on. Of course, this was on Saturday, and the on-call pediatrician was the one I did not trust. Since we saw no other signs of problems, we decided to wait until Monday when I could see my regular pediatrician. By Sunday night, Matt's nursing was deteriorating. We were in the pediatrician's office at 8:00 a.m. Monday morning!

The pediatrician heard Matt's heart murmur and knew it was serious. He immediately sent us to a pediatric cardiologist. (What was THAT?) After an EKG, we were taken to the darkened room for an echo. He only looked at Matt for about two minutes, then put the wand down and told me that my son had a very serious heart defect that would need surgery to correct. I sat there, stunned. Then he told me, "You are going to pick up your son and carry him as we walk over to the hospital to the PICU where we can stabilize him. We'll talk as we walk." I will never forget those words!

After he was stabilized, the doctor performed a lengthier echo, and then sat us down to explain what Hypoplastic Left Heart Syndrome was and gave us our options (compassionate care, transplant or three corrective surgeries). We immediately knew we wanted to do the surgeries. He felt that Matt's best chance was to go to a surgeon in Delaware, Dr. Norwood, who was the pioneer of these surgeries. My husband and Matt were medically flown from Louisiana to Delaware, and I came the next day.

Matt had his Norwood surgery two days later. He was in and out of surgery in two and a half hours and was extubated the next day. He was in the hospital a total of nine days before we were released. Our cardiologist in Delaware checked him out a few days later and sent us back to Louisiana.  (Two weeks later, our oldest son, Benjamin, was diagnosed with a subaortic membrane -- much to our surprise. Click here for Benjamin's portrait.)

Things were going just fine. Matt was eating and gaining weight. He had no reflux or eating problems. When he was three months old, the doctor found that the hole that was made in his heart during the Norwood surgery was closing up. He had a cath by our cardiologist in Louisiana who then sent us up to Delaware for another cath that would balloon open that hole. The procedure went fine and we were home in three days. At six months old, we traveled back to DE for Matt's hemi-Fontan surgery. Dr. Norwood was again the surgeon. He was in and out in two hours and did wonderfully well. Five days later we were headed back to Louisiana.

In September 2000, right after Matt's one year birthday, we went back to Delaware for Matt's Fontan surgery. (Dr. Norwood routinely performs the Fontan at one year.) He did just fine through the surgery and was out in two and a half hours. He was extubated a few hours later. Three days post op, he developed a small pleural effusion over one lung, but heavy duty diuretics took care of it. We headed home about two weeks later.

Matt has been doing just well since. He is walking, learning to talk, and driving his big sister and brother crazy! He has a check up with our cardiologist in Louisiana at the end of June, and then we are heading up to Delaware for an annual check up in August. We are watching him for signs that his hepatic vein (fenestration) needs to be closed. His hemoglobin is starting to get high, so we will see what happens.