Michael was born at Princeton New Jersey. Our first indication that Michael was going to be a special child was he was born with club feet, a cleft in the soft palate along with a split uvula. He also had a poor suck (due to the cleft palate).
July 1992
Michael's blood was drawn and submitted for genetic testing at Princeton Medical Center. Michael was casted for club feet.
July 1992
Michael was observed at Childrens Hospital of Philadelphia (CHOP) and was recasted.
August October 1992
Michael was recasted every week at CHOP for several months. In an attempt at getting his feet into a more functional shape. During this period the orthopedic surgeon suggested a genetic consult as he suspected that Michael might have a connective tissue disorder known as Ehlers Danlos. During this time mike was in a lot of pain and he cried a great deal. In fact it was well over a year and a half before he slept through the night.
January 1993
Mike had surgery performed by the pediatric orthopedic unit at CHOP for his club feet. He also had surgery for his cleft palate. The surgery for the palate had an unexpected complication of bleeding which required emergency correction that same night. We believe that this was the result of his having connective tissue problems making the suturing job all the more difficult. The orthopedic procedure required the insertion of a long pin in each foot (lengthwise) which caused great pain whenever they were accidently bumped.
January 1994
Michael had been having very frequent ear infections and as a result we had ear tubes inserted several times at CHOP. We ended up consulting at another facility. This turned out to be a bad move as the new doctor used the "T-TYPE" of ear tubes (hoping they wouldn't disloge as easily), which caused problems later by creating large holes in each ear drum. This is certainly a caution for others that may have a connective tissue disorder.
January 2007
Michael was diagnosed as having Loeys-Dietz Syndrome based on a mutation of the TGFBR2 gene. This diagnosis finally answers the questions as to what has been going on all along, but the size of his aorta (4cm) is now of major concern.
April 2007
Michael had a comprehensive 3d CAT scan at John Hopkins Hospital which served to further verify the diagnosis and showed a second potential aneurysm site in the neck which will need to be monitored.
June 2007
Michaels Aorta was successfully repaired on June 12th at John Hopkins University. The procedure employed was the valve sparing procedure so that Mike does not have to take blood thinners.
Jan 2008
Michael underwent spinal fusion surgery to correct his spinal curvature at Childrens Hospital of Philadelphia.
