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Bob's Story
My name is Bob, I am a 47 year old retired career Army Officer (now a consultant) married, with two children and a Lhasa Apso named Pepsi They aren't children anymore, I should say teens or perhaps young adults (but don't tell them that).
I was born with a unilateral cleft lip, partial cleft in the gum and a separated/split uvula. I consider myself lucky in that I did not have any severe speech or hearing disorders generally associated with a cleft. Growing up in the '50s there was nothing like the Cleft-Palate or Cranio Facial Teams that are prevalent today. I sort of wish I would have been more interested in what I went through and knew more about the doctor who took care of me up until I was 14 or 15 years old. But, hind sight is 20-20.
My wife, No Kyong, whom I met in Korea (1976), gave birth to our first born (son) in 1980. He was 11 weeks early (his time table, not the doctors) was healthy as a horse, except that he came in at 2lbs-9ozs on Father's Day in 1980. On the other hand, our daughter born 25 Dec 1983 at the 197th Army Evac Hospital in Frankfort, Germany was born with a bilateral cleft lip and palate (hard and soft). We had heard that clefts are congenital and such, but after our son was born healthy, it really didn't cross our mind. Standing in the delivery room when Rebecca was born was exciting, and about the only one who reacted surprised was the Army Major who delivered her. She (Dr. Chi) immediately took Becky and it was a bit longer than usual until she gave her back to my wife. I seemed to know something was up since the Dr did not show Becky to my wife immediately at delivery, she sort of hid her in passing her over to the nurses to get suctioned and cleaned up. Regardless of the circumstances, it was a very merry Christmas Day for us in 1980.
For the sake of trivia, I was born on Father's Day 1949 @ 2lbs-15oz. About 11 weeks early; Louis, our son was born on Father's Day 1980 @ 2lbs-9oz, also about 11 weeks early; Becky was born Christmas Day 1980; and my wife No Kyong was born on Valentine's Day 1955.
Now, back to our story
What then began to unfold was what a lot of you have gone through. What do we do, where do we go and who do we see. I guess it was even a bit more traumatic since I was in the middle of a tour of duty in Germany, no family around, etc
We weren't in a big stateside city or near any university medical complexes. Obviously, the Army wouldn't know what to do. Boy, was I wrong. The Army had been changing drastically, especially with consideration for families, quality of life, and "Exceptional Family Members". The Exceptional Family Member program was instituted for those military families with family members who suffered from birth defects, mental illness, etc., so as to assist them as much as possible in caring for the family. How could a soldier (regardless of service or rank) function and do a good job if he/she had to worry about special family problems.
This program brought together the best of both worlds (in my opinion). Let me tell you how. The Army happened to have a real, honest to goodness cleft-palate team (full-up) that worked out of the Army Hospital in Landstuhl, Germany. Funny, but not knowing how prevalent cleft palate births were, I almost thought that no one else ever had this happen to them. Boy, was I one of the uninformed. Even at the Army hospital in Frankfort, they were able to tell me about the team and believe it or not, they were able to give us the special baby bottle nipples to feed Becky with, since she could not suck on a regular bottle nipple.
Any how, Becky had her first surgery in Landstuhl at about 3 months. They closed her lip, and put tubes in her ears. This was around April of 1984. She was back in the hospital to replace tubes and have some oral surgery (at 18 months old in 1985 before we rotated home to the states).
Once back home, December 1985, I was stationed in the Metro Detroit area (happened to be my hometown also). It was almost like starting over because we lost the security of working with the Doctors and professionals on the Army Cleft-Palate Team in Landstuhl. We had to find a new "team", wonder if they were as good as the one we left. Would they continue on with what we had started, would they change things, etc, etc, etc., Well, that wasn't too bad either. We ended up with the Cleft-Palate Team at Children's Hospital of Michigan (then Detroit Children's Hospital). They were great, but we always had the feeling we were passing through (because of the Army) and would have to change Teams again. Since there was no major Army or military facility in the area, we were able to seek out a referral and switched over to a plastic surgeon (Dr. Tom Kapetanski) who was the head of the Team at Sinai Hospital in Detroit. He proved to be super and extremely caring and talented. Unfortunately, he was killed when his plane crashed around Christmas of 1987 (I may have the date wrong). He was able to to a revision on Becky's Cleft Lip in the summer of 1986.
What has happened, again, faced with finding someone new. Starting over again, after we had felt comfortable with a Dr and a team.
We opted to stay with the team at Sinai, another Dr (a talented oral surgeon took the team over). He has been taking care of Becky since 1987 or so. He performed the bone grafting to her upper jaw (left and right of of the maxilla).
Now, Becky will be 13 and in the next couple of years we will be faced with another round of surgeries in the Cleft Palate time table. There is still some jaw related work to be done, and always the concern about a prosthesis to help her speech (though she hasn't needed one to date). If those tonsils ever need to go, she will be impacted. By the time she is 17 or 18, she will be at a stage where hopefully the final revision work can be done or will have been completed on her lip and nose.
The things we have to be prepared to deal with are her move into junior high next month, new friends, more activities and of course "BOYS". We worry, as any parents do, at what her reaction will be if she doesn't' get invited to the "big dance" (whenever that may be), her first date, etc. She is strong, intelligent and pretty, but, no one has put her to the test yet... the test I remember as a youngster and teen, the name calling or perceived rejection by kids, talk behind your back, etc. Whether it actually happened, or was imagined, there were "differences". I honestly believe I was not impacted severely, but at times it was a "crutch" to lean on.
I hope that part of growing up with a Cleft has changed. So far it appears to have, but there is always uncertainty.
Thanks you for your time and the opportunity to submit this story.
I will continue to monitor Cleft-talk, and can always be reached via email. I hope this story proves helpful, if only to one person who reads it. I plan to have Becky access Wide Smiles and Cleft-talk also. She can write for herself, and also read about the experiences and successes of others.
Sincerely,
Bob (Becky's Dad) Stavale email:"stavale@wwnet.com" or "bob_stavale@cpqm.saic.com"