Cleft Lip and/or Palette

[srv]

Hi. My son is nearly 6 months old and also has a cleft lip and palate. We found out during the 20 week US and got to meet our cleft team...plastic surgeon and speech path before he was born. Also gave the whole family the chance to look at lots of photos to prepare themselves. They also think ours is not hereditary. He has no other underlying problems.
When we found out we were devastated but now I can't believe we thought it was such a big deal. He is the most amazing little boy in the world. We also loved his face the way it was..cleft babies have the most beautiful smiles I have ever seen. Their whole mouth opens up and their face just lights up. I say how his face was as he had his lip repair done when he was 3 months. He now looks "normal" whatever that means. We were so nervous before the operation cause we loved him the way he was, he was happy and healthy and we were sending him off for an anaesthatic at 3 months of age. He looked so different after..it took a few weeks before he looked like my boy again.

You're right, poeple don't understand unless they've been in the situation. When we first found out about the cleft I thought I would be counting down the days till the op, but as it got closer I got more and more nervous. It was hard when people came to see him early on and never said he was beautiful but we could always see how special he was. They always thought we would be hanging out for his face to look "normal" (I hate using that word because to us he was so gorgeous) but we really loved his face th way it was. We had heard that for manyparents the hardest part of this whole thing is dealing with your babys face changing so much. We didn't understand till we got to that point. We had spent 3 months bonding with our baby and the face he was born with and that was going to change.

When we first found out about it and were trying to deal with it eg "why did this happen to us?" my SIL said, "because he chose you, he knew what special parents you would be to him"

Actually I have to go feed him but I will also write more too as I would also like people to know more about clefts. Will write more after the feed.

When is your lip op?

[Pretty Butterfly]

So happy to from someone in the same boat!! Kanes op is in 5 weeks and I'm dreading it. As much as he needs it, I know how much I'll miss his face!! Our other children cant understand why he has to change at all. They've all taken photos to school to show off their special bub!!

I too was devastated when we found out at our 19 wk ultrasound. Cried for agggeeesss!Now I cant beleive what a big deal it ISN"T!! We never said why us?? I wondered why this little baby?? He didnt do anything!! Why inflict him with such a hideous face?? I often cried to DH and said why cant it happen to me instead of him?? But I now know Kane is just SO special, and definatly not hideous!! His face lights up the place everywhere we go!!

Just got home from being out, so need to go pump. Will be back soon also!!!!