Christopher Michael (hence the CM) was born in Los Angeles, CA in 1992. He was a delight. Happy, beautiful, social, hungry.
At his six-month check up, the pediatrician took one look, put the stethoscope to his chest for two seconds then stood up and said, "You need to get your son to a heart specialist right now." I found myself in the car with Christopher trying to reach my husband to tell him what was happening. "There's something wrong with Christopher" was all I could remember saying.
Christopher had been diagnosed with a rare heart condition but the echo cardiogram did not show any thing decisive. With the help of Bernie Brillstein and Mike Ovitz (friends at the time) we were able to get an appointment with the top Pediatric Cardiologist at Cedars Sinai in LA, Dr. Roberta Williams. She did not give us much hope. I remember not being able to comprehend what she was saying. "Fatal - as in he's going to die?" is the only thing I could ask. That night, sometime after midnight, Dr. Williams called us and told us she believed she knew what it was. We were to come in first thing the next morning for a test that would confirm her suspicions.
The test revealed he had an Anomalous Left Coronary Artery. (Both arterial veins were attached on the same side.) It would mean open heart surgery. An extremely risky endeavor since the operation was still very experimental. However, as prayers had guided us, Cedars Sinai just happen to have the Top Pediatric Heart surgeon on staff. Thank you Dr. Hillel Laks for saving our son's life. Not once, but twice.
After many hours of surgery and several life threatening situations, we were finally able to see our little pumpkin. This tiny little boy was in a drug induced coma lying in the bed with tubes everywhere and his insides exposed covered only by a clear film. His heart had become so enlarged that they were unable to close his chest right away. They also found out that his heart had collapsed his left lung. He was on heart and lung support, his chest was open.
The following Friday, just shortly after they closed his chest, they took another echo cardiogram (only because the machine happened to be in the ICU for someone else. Thank you again God) and discovered a large Thrombus (blood clot) in the left ventricle of his heart. They would have to open him up again and try to remove the thrombus before it dislodged. The doctors were not very optimistic though.
After more hours of praying and worrying, the doctors and nurses told us everything went well. They were amazed at Christopher. He was only the second child at that time to have survived the first operation and now they had successfully completed the repair to his heart. "A miracle", they said when he was in recovery. His case was all over the hospital - the miracle baby. He was also the first child to be on and off the heart/lung respirator twice.
We spent three months in PICU (Pediatric Intensive Care Unit). We never requested any of the non-denominational ministers, but they were always coming by. Maybe it was the picture of Jesus we had taped on his bed so Christopher could see it if he ever opened his eyes. One of these special people who came to see him was named Angel.
So began countless hours of therapy that started as soon as we got him home. He screamed all the time, was ridged as a board and would not eat well. While in California, he had a challenging regiment of therapies, including Physical, Occupational, Speech, Chiropractic, Cranial Sacral (in its beginning of popularity) and Horseback riding, almost everyday.
Driving to all these things, working around medication schedules, special diet requirements and Doctors finally got to us and we moved back to Connecticut to be with family.
His heart has healed but the extensive brain damage from the operation remains. He is dependent on his wheelchair, needs assistance with almost all tasks, does not have clear recognizable speech, has little use of his left side and has had a major seizure disorder that, up until Thanksgiving of 2007, had been uncontrolled.
Since graduating from a public school system that really supported the inclusion of children with all ranges of special needs and talents he enjoys a social life filled with travel, music and of course, art. Our artwork has been shown in a few galleries and has won several awards.
Thank you to all of the therapists we have worked with over the years. Too many to name them all, but they will always hold a special place in our prayers. Without all of them, we would not have traveled this road as easily. Every one of them was placed in our path for a reason.
We are especially grateful for the following people and organizations. It is so important to support them and return to them in any way possible some of the generosity they provide.
Steve Moran, missionary and owner of Crossroads Physical Therapy LLC. Founder of Camp Care, Columbia, CT.
Everyone at Litchfield Little Britches, LLC riding program.
Special Olympics, Connecticut
We are also especially grateful to:
His grandpa, Ralph, for all his patience and the ability to watch and enjoy Mary Poppins (Christopher's all-time favorite movie).
Linda Bamonte, P.T., who started with us before Christopher turned two through the Connecticut Birth to Three program and will hopefully be in our lives forever.
Antonio Alexandre for his daily and loving care.
All the enchanting people who have provided photographs and videos for this site.
Also all who helped with the forming and maintaining of the site.
And of course, his wonderful, creative daddy.