Any Parents with Children Who Have Cleft Lip/palate, Microtia or Facial Asymetry

Hi J..

I don't have a child who was born with a cleft lip and palate. However, I have an uncle who was born with one in the 1950s. He is one of 5 children total and he is one of the best people in the entire world. Like you said about your son, he has the best heart and personality. I know he was teased as a young boy, but came through it even more caring and strong. I think the reason for that is having a strong, supportive family that he could always count on. He is now a successful man with three beautiful daughters and a grandson. I've always felt lucky having him as an uncle. It sounds like you have been blessed with a special little guy!

M.

Hi there! I have 2 boys and my youngest was born with a bilateral cleft lip. He had surgery when he was 3 months old. Im here if you ever need/want someone to talk to :)

C.

Hi J.!

It breaks my heart to hear your story. I know just how hard it is because my little sister who is 10 years old has Neurofibromotosis which causes tumors (all over the body in extreme cases). Thank God, her case is mild but it still caused some disfigurement to her face. She has tumors on her optic nerve which makes the right side eye area look extremely puffy. Unfortunately during her multiple open scull surgeries, the doctors were not able to remove it all. Kids AND adults stare at her and ask questions. She definitely has psycological issues although on the outside she seems like a happy 10 year old girl.
Honestly, we all rely on the support of friends, family, and mostly God. We pray daily for God to just heal her. He's done it before, we have faith that he will do it again!
As for the teasing, we all know that kids are brutal. Now this is only my opinion but a good way to avoid the inevitable is to not put him in an enviornment where he can get teased. Homeschooling or a small private school are good options. They both worked for my sister. She went to a small christian private school and everyone loved her and accepted her for who she was. She was actaully the most popular kid there! She's now being homeschooled along with my 12 year old brother. They have friends at church and live on a farm so there is plenty of interaction with people and animals.
I truly hope this helps you. It helped me to talk about it.

One of my really good friend's had one and so did her mother. They both got surgery, and have a little scar, but it is just a hint of character now. Hopefully it isn't bad enough to impair his dental health in the future if you decide not to get the surgery.

Homeschooling or putting him in a safe enviroment and even counseling may help him now, but as he enters dating age, or becomes an adult and enters into the job force it may be brutal for him. I would try to get it corrected if it were my child, better go through it now than go through a lifetime of ridicule.

My father went through 25 years of disease and the radiation gave him cancer in the face. He had bones removed all his teeth but 4, skin grafts... he looked like a frankenstein, seriously. He was the strongest person I know (he even spoke at Anthony Robbins events and was a volunteer for church and many organizations through his pain), but I would catch him crying from the ridicule... he was obviously very sick and children AND adults called him such terrible names in public and shuned him like a leper the worse it got.

I would do everything in my power to prevent this type of torment for my child.

I'm a curious person so I would wonder what happen to him. Are the kids just curious or are they being mean? I wonder, now that there seem to be questions from the kids, if you and your son could spend a little time in his class doing a little presentation so you can answer all their questions at once and put a positive spin on it. Once all their questions are answered they probably won't see any differences and just get on being his friend. As the years go on and he's with the same kids he probably won't be asked anymore. You son is lucky to have such a supportive and loving family.

My daughter is deaf in one ear and did not notice she was different than everyone else until 2nd grade. Suddenly she hated being deaf, hated speech therapy, hated school and classmates. It went on for a few years. Kids can be so very very mean at thia age. And I went to a private school. I can't even begin to imagine how bad it would have been at public school. Thankfully she is in middle school this year and has blossomed.

My heart goes out to you and your beautiful son. It will be a rough road to hoe, but he will emerge from it triumphant and stronger because of his struggles. So not really an answer, but my perspective from what I have seen my daughter go thru. I hope it helps and encourages. Once he is a little older you may consider having him see a therapist of some sort. Sometimes mom (and dad) are just not who they need to talk to.

Oh and something I forgot to mention. The school is not allowed to mention his "handicap" at all even if it is obvious. Once I found this out, we started doing an intro at the beginning of the school year. That she was part deaf and may not hear everything. So if she seemed to be ignoring you make sure you get her attention, etc. Maybe if he talked to his classmates and let them know, hey I may look different, but I am the same as you, it may address any questions the kids have and are too uncomfortable to ask. Get his difference out in the open so everyone knows everything and it may be easier for him. It definately worked for My daughter.