Our second son, Harrison, born on June 22, 1999 was recently diagnosed with lobar holoprosencephaly. He was born with a cleft lip and palate and has a small head diameter (< 5th%). He also had jondice, keeping him in the hospital an extra 8 days after birth. An MRI was ordered due to his head size, but the local doctors did not see anything conclusive. We brought him to the Cincinnati Children's Hospital on July 7th to have the craniofacial team advise us on his cleft. The Geneticist took one look at the MRI films and diagnosed the condition. My wife and I are still in a state of dis-belief. Aside from the cleft, Harrison seems like a very normal baby - we haven't observed any seizure type behavior or anything. He sometimes seems to have trouble breathing (load breaths), but that could have to do with the cleft. Since the diagnosis, I have contacted my employer and requested a transfer to an area with better medical facilities - Bowling Green is 60 miles from the nearest pediatric ER (Nashville). We should be in a better area in a month or two... We are still coming to grips with the diagnosis - all of the research we have done suggests a bleak outlook, but we are far from ready to give in to that. Any information from those of you with more experience with this condition would be appreciated.

new address:
7503 Blue Fox Run
West Chester, OH 45069
513-759-5176

e-mail: dstauft@cinci.rr.com

In addition, we would like to say that we moved to Cincinnati on 10/1/99 to be closer to the craniofascial team at the Cincinnati Children's Hospital Medical Center. On 11/11/99 Harrison had his lip closed and nose rebuilt by Dr. David Billmire, who did an outstanding job. It is amazing how much Harrison resembles his brother now. So far, we still have not had any neurological problems pop up, so we are hopeful. His chromosomes and hormones have been tested, with no abnormalities found. The only issue that has us especially concerned is his head circumference - it does not appear to be growing at a good rate. We'll keep everyone informed of progress and findings as they surface.

Thanks,
Dan and Heather Stauft