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MADforever2009
member
looking to connect with cleft lip/palate moms
MADforever2009
member
just looking to connect with moms to discuss issues such as feedings and future surgeries. I have twins and one has cleft lip and palate.
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Re: looking to connect with cleft lip/palate moms
Welcome. I just wanted to hijack the post and say your twins are adorable! I don't have a baby with cleft, my cousin was born with a cleft lip and palate, my aunt and uncle adopted him at 6mo from columbia. He had a few surgeries (he's about the same age as me) within his first few months in America. My aunt fed him with the haberman feeder and he did very well. He took speech class in elementary school (back then it was bsi, basic skills improvement) and he does have a noticeable difference in the way he forms vowel sounds. Other than that he's perfectly normal and adjusted.
Congrats on your adorable babies! My oldest was born with a severe unilateral complete cleft lip & palate. I would be happy to answer any questions as we have been through a lot already.. but it is well worth it! He is almost 5 & a very typical boy. He is just starting to ask questions about his lip - but that is because he went through a revision in October. At this stage it will be harder on you than on your little one!
Robyn
thanks for sharing your story. I feed Cooper with a haberman and he is having his first appt with his surgery team in january.
My SIL just had a little girl on December 7th with a cleft lip and palate. She is using the Habermans too and seems to be doing very well after a couple of weeks in the NICU. She hasn't started a blog or anything yet about it - but I will pass your blog site along to her if that's ok.
My DS has a bilateral cleft lip and palate and will be born in April. It has been a rough couple weeks for DH and I with the news and the way my moms side of the family is dealing with it. They act like its my fault that he has this issue and that I should have been better at taking care of myself the first couple months of my pregnancy.
I can't help but feel bad for the little guy and all that he will have to endure in the first year of his life but I have come to terms with the fact that it is fixable and eventually we will hardly notice that its there.
My Dd does not have a cleft lip and palate, but I did when I was born. And your LO's looks just like mine did in pictures that I have seen of me when I was little.
I just wanted to offer some of what I know even though times have changed in the last 23 years. I had one surgery when I was 5 months old. My parents were worried about it affecting my saying "ma ma" and "da da", but it did not. My mom told me about how when we were at the hospital I kept yelling "ma ma" very loudly.
I am not sure about feeding...they did not tell me any of that. But, I do know I was bottle fed. I was adopted so that was really the only option for me.
I wish I had closer up pictures of me so you could see the little scar that I have. It is like a little lighting bolt from my nose down to my lip. And unless you are looking quite hard for it you probably won't see it on first glance. It used to bother me when I was younger because kids would always ask what happened. But, I got over that.
Like PP said it is fixable. And with the great plastic surgeons that we have now-a-days it will probably not be very noticeable.