Lennon

Our son, Lennon Rudolph, was born on April 19, 2007. When we heard his first cry, we were overjoyed! Right after he was born, my OB told us that he had two big toes, fused together, on each foot. He also told us that this was not uncommon. But coupled with the fact that I had shown a 1 in 45 chance of Trisomy 18 on my quad screen, I started to worry. Then when his dad, Bruce, went in the back to cut the cord, the nurse said, "See how his extremities are still blue? We have the pulse/ox meter on him because his oxygen levels are not coming up like they should." I lay on the table while they sewed me up (c-sec) wondering why they were not bring my son out to me. Then they brought him out to see me for a minute and said, "we are taking him to the nursery, come on Dad." Again, I was wondering why he was not laid on my chest like I had requested.

While I was in recovery, Bruce came in and said that Lennon was having some trouble with his saturation level and keeping warm. So they were taking him to the NICU. I started to panic a little but I told myself that he would be fine and Bruce agreed. Finally they wheeled me into the NICU to see him. He had so many tubes and wires coming out of him that I was shocked! A pediatric cardiologist was going to come in and do an echo and the geneticist was there also. He was tossing around Rubinstein-Taybi Syndrome but it was rare and he was not positive. When they did the echo and we hear "Look at the left side, it's not there", we were devastated. We had no idea what it meant but we knew it could not good. After being transported to St. Christopher's in Philadelphia, the diagnosis was confirmed. He had both HLHS and Rubinstein-Taybi Syndrome.

We were told that the Rubinstein-Taybi Syndrome made him a bad candidate for the Norwood. After a second opinion from the Cleveland Clinic who confirmed the diagnosis, we decided not to put Lennon through the operation. So, we took our beautiful little boy off the meds and took him home. We had four more wonderful days with our angel, in total he lived 12 days, 4 hours and 26 minutes. He never slept in a crib, only in mine or his father's arms. He got to spend time with his brother Jim (17) and Rhiannon (15). He met a lot of his family and we took over 700 pictures. We are forever grateful for the time we had with him and the way he changed our lives. He will live in our hearts forever.

Written by Lennon's mom, Nicole - Pennsylvania

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