May 2015 Moms
tanamarie22
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found out baby has a cleft lip, any positive advice??
tanamarie22
member
We found out at our 20 week appointment that our baby girl has a cleft lip on the left side. Can't help but stress & worry about after birth..any positive advice??
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mlwestm1 member
I have a friend who didn't know her daughter had a cleft palate until she was born. She's done VERY well though and the reconstructive surgeries are so advanced now that you can't even tell she originally had a cleft palate. There may just be some adjustments initially to feeding because of the cleft until the reconstruction. -
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jennygirlmt member
I'm sorry you found that out. A little girl in our playgroup has a cleft palate. Her mom pumped and they had special bottles for her. She's had quite a few surgeries, it seems to be progressive series throughout toddlerhood. And it's barely noticeable now. I know its not t something you want to hear, but the medical world is amazing and your baby girl will be fine!
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saric83 member
I actually have bilateral cleft lip and palate, and I was kind of anxious to see if our LO would have it too. But truly, it was for my own mental adjustment, not because I was worried about the LO. It really is such a non-issue in my life (even though it's the most severe form of it), and most people that meet me seem surprised if they find out.When we were thinking about the chance of any future kiddos of ours having it, the biggest stress point for both of us was mentally preparing ourselves for what it would look like for the first few months. It's SO superficial and petty to even worry about that, but it didn't change the fact that's how I felt, and I bring up to show that beyond the superficial stuff, everything is easy enough to deal with!I had lots of surgeries growing up, but mainly they were all really minor, and frankly, I didn't know anything different, so it really wasn't a big deal to me. I was usually just pumped that I got extra ice cream in the hospital.
Most of them were scheduled over summer or spring break, so I wasn't out of school or anything. Overall, it just seemed like I had more teeth-related work done (retainers, braces, etc.) and ear problems, which can go hand in hand with cleft lip/palate, but it was nothing out of the range of normal for anyone without cleft lip/palace. I never had to do speech therapy, which some kiddos definitely have to do, so that would likely be the only routine "abnormal" thing. I met with a team of specialists once a year (all in one day) to cover everything, and that was it.Any other day of the year, it didn't exist to me, my family and friends. I was NEVER bullied for it, and I had a completely normal childhood existence with socializing, school, boys, friends, etc. If anything, it gave me a stronger sense of self and confidence in middle school and high school because I rarely attached my self-worth to my looks (and as weird/obnoxious as this sounds, I'm cute and the spitting image of my mom at my age, who does not have cleft lip/palate.)Whew! That was a giant novel and really self-involved, so sorry for that. But it was something that was going through my head a lot over the few weeks before our AS. Obviously, this is just my experience, and it's certainly different for everyone. But I hope it helps qualm some fears you might have, and if you ever have questions or want to chat, just PM me! -
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AshSturgis member
I'm a speech language pathologist. I would recommend finding a cleft palate team in your area. If it's complete (all the way to the nose) or incomplete (just part of lip not up to nostril) will determine a few things. Most small cleft lips only (not palate) only require a quick surgery in infancy and should affect much after that. The initial shock will be the first few months of life with no surgery. Again, depending on extent of cleft, most kiddos do extremely well with eating and speaking. Good luck!! -
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CateOfChicago member
Very sorry to hear that. It sounds like from others there's an easy fix. Praying for a speedy fix and recovery.
Franco Paul born 6/4/15 at 39 weeks. Mila Francesca born 10/19/13 at 37 weeks. Both born via C-Section after 6 years of fertility treatments, disappointments and losses. Love them!!
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estiebs member
Hi Tana. I've worked with children with cleft for 10+ years and it is AMAZING how well they do! I would echo the advice to find the cleft team in your area, if you haven't already been referred to one. I would also suggest you join the group CleftAdvocate. They are on facebook and have thousands of members across the country and are an incredible resource. Debbie Oliver runs the group and is tireless and the mom of a child with a cleft herself. They welcome new members who are expecting babies with clefts. You can also reach out to her at debbie@ameriface.org. Hope this helps and congratulations on your baby girl! -
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memilis member
Sorry to hear that , I think at that point you have to accept it , yes it is unfortunate but it is what it is . Cleft lip/ palate are manageable , I am sure your baby will have full and happy life .
As a dentist there is series of reconstructive surgeries that each has its timing and the first one the sooner the better , so what you can do for now is gain as much information and make a plan to get started as soon as baby is born . -
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BrooksManor member
My little cousin was born with a cleft lip and it was kinda into her nose and throat. Not a full palate. We knew none of this till she was born. Only pregnancy issue she had was she stopped growing. She has Wolfe Hirschorn syndrome, come to find out. She was a perfectly healthy baby otherwise this, she wasn't allowed a surgery till she was a year old cause of her size and growth. It was a very successful surgery. She'll have to have maybe another one or two. She having compound problems it takes longer to do things. She finally got a feeding tube a year ago and she's finally growing. Just remember you won't love your baby any less and neither will anyone else, there are plenty of support groups and plenty of ways to fix things in this world now. You'll have an uphill battle for a while but pretty soon it will be okay....hopefully you won't have to wait a year for a surgery like my cousin. If anyone is rude, give them the boot....Cause it will happen.
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