I was just informed my child will have a Cleft Lip and Palate...

Sana - posted on 04/06/2012 ( 14 moms have responded )

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I am so nervous, I found out a few weeks ago my baby girl will have a left cleft lip and palate. I read a lot about it and I am ready for her to come to the world, it's just so heart breaking to know they will go through all these surgeries! Has anyone experienced any other problems along with the cleft lip and palate?

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Amanda - posted on 08/28/2012

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Hi everyone i have just recieved news that my baby will be born with cleff pallet im extremely emotional..we are waiting on a special iltrasound to confirm ..how do i deal iam such a wreck:(

Sana - posted on 08/21/2012

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Just wanted to comment after my post. I went to labor last thursday and had my baby girl on friday!!! We are home safe and healthy! Turns out the doctors were wrong.. She was born with only a partial cleft lip on the left side. The palate was not missing. This was a big surprise to us. we will be meeting witht he surgeon for the lip repair next week (still so nervous!) but i know my baby girl is a warrior. Theres nothing like being a mom and no matter whats wrong with your child you know everything will be ok when they are in your arms.

User - posted on 05/22/2012

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My baby boy will be a month old on Friday. He was born with a cleft lip on the right side. His palate is completely cleft on the right side and he's missing the soft palate on the left side. We didn't find out he would have a cleft until I was 38 weeks pregnant and I delivered (c-section) at 39 weeks. It's an emotional roller coaster but the moment you hold your baby in your arms you know that he/she is going to be okay. He eats from a Haberman Feeder and gained 9 ounces in one week! He's facing his first surgery in August (the lip repair) and at 9 months will go for a palate repair. Does your baby have a unilateral or bilateral cleft?
There's nothing better than being a Mom, best wishes to you and your baby!

Liv - posted on 05/24/2012

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My baby boy was born 5 weeks ago with a cleft lip on the right side and a bilateral cleft palate.
I found out at 21 weeks! It was a blessing to know ahead of time. We were able to research and prepare our hearts for what was to be. We are so in love with our little one and although the road ahead looks bumpy......he won't remember most of it. We did have a scare in the hospital when they found an extra dimole on his bum ( sacral dimple) and they thought it might be spina bifida. So, they sent my tiny little baby for an MRI at 5 days old. He is fine and it made the cleft seem like nothing compare to that. Don't be surprised if the are extra cautious with your little one because of the cleft!!!!!!! Many Blessings to you and your little one and try to enjoy the ride.

Karen - posted on 05/22/2012

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It is scary, yes, but the nurses and doctors are fabulous! You should be be seeing the cleft lip/palate clinic where ever you are and they are a tremenous help. We also had cronic ear infections, but the tubes in the ears help that. The NAM they use is a little scary at first and so is getting used to using the haberman bottle. My little guy lost weight for almost 3 weeks before he stablized and started to maintain and slowly gain. Again, the health nurses were very encouraging. My Little guys is now 2 yrs old tommorrow! He breezed through the surgeries and no one even notices that he was born different. Sometimes there are groups in your area that you can join or people you are able to talk to that can help through the tough times or just be there for moral support. Good luck. I'm sure you and your little girl will do great!

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Michelle - posted on 08/30/2013

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How are you and your baby doing now? If you want to we can chat thru email. I hardly get on circle of moms. My daughter is 6 and was born with cleft palate. Thanks Michelle
katiekyle0709@gmail.com

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I was so nervous after I found out that my little boy would be born with cleft lip and palate. But, honestly, I wish I would've never took it as hard as I did. A lot of people are nervous which is understandable but everything will be ok with your baby. We just have to do and go through different things than others, in order to make sure our babies are completely comfortable. It's hard, the surgeries are harsh but out of all honesty, the experience taught me a lot and I wouldn't trade my cleft baby for another baby in this world.

Donna - posted on 11/17/2012

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My son was born 18 years ago with cleft lip and palate and I knew ahead of time. It was very scary at first but we got through each step with a lot of patience. He had to have his tonsils out but he has not had any tubes in his ears which surprised the doctors in Atlanta when I took him. The first surgery is always the hardest. You don't know what to expect but it all works itself out. He has had to have a total of 6 surgeries counting his recent bone graft! But this does not mean the same for your daughter. Each is different!! He did have a hard time with anesthesia a few times but that was when he was younger; not every time. I am sure she will be fine!!

Angela - posted on 09/20/2012

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We were informed in the 8th month that our baby girl may have cleft lip palate. We are looking for websites for help with financing these surgeries. :-(

Barbara Johnson - posted on 08/31/2012

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I have two kids with clefts - both adopted at age 4, one from Russia and one from China. Your daughter will have the best of care and will have her cleft lip fixed early in life that scarring will be minimal. The cleft palate might cause speech issues but my two not only learned English but also worked with a speech therapist and both now have perfectly clear speech. You can almost count on braces for your child but in our case, since the braces were a medical need, they were covered under our medica insurance. In fact, my son is on his second round of braces - had them at 12/13 and he is now almost 16. His jaws are not lined up so he doesn't have but one tooth surface that meets for chewing. Hasn't really been a problem since he eats none stop and is now over 6'2" tall at 15. He will have jaw surgery to correct the problem once he is full grown. Along with the clefts sometime there is nasal problems. My son's septum is pushed to one side and he will have that fixed in the same operation but my daughter has no nasal problems at all. All in all for a special need, cleft palates and lips are fairly easy to deal with it just take time with the different operations - like the bone graft - needing to be done at different times in their lives. Basically it is cleft lip right away so the baby can suck, cleft palate a little later, fine touch up of the lip scar if needed as the child grows, bone graft at about age 12 or 13 - my kids were done at age 12 and 14 on the same day - and then jaw and nasal surgery if needed when they are full grown. Usually 16 for girls and late teens for boys.

Amy Lynn - posted on 07/03/2012

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My gorgeous little man is about to be 7 months, and you can't even tell now that he had a bilateral cleft lip! :) He is gettting the Cleft Palate surgery this October. They say it's harder on the parents than the babies-they are fighters and bounce back quickly. The first 2 months were hard just because of trial and error, but please feel free to call the hospital lactation consulants. They checked in on us alot and that really helped (I'd think of questions AFTER we got off the phone so I wrote them down for next time). Just remember, this is only temporary. It is cosmetic, and can be fixed, so just try to enjoy your baby and the miracle you have and don't sweat the small stuff! :)

Jessica - posted on 06/28/2012

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It is normal to be nervous I know I was but they grow up to be mnormal kids if you need any haberman bottles i have some that is not even open i will let you have them. Mya is about to turn three and she is doing fine at first we had problems feeding her but once they taught us how to feed her correctly we was good to go. I have some before and after pictures i will let you see. She is now waiting for the surgery were they take a bone from her hip to put in her gums and thats around 6 or 7 so for right now she is pretty much done. She has to go to speech therapy some words she cannot prounonce very clear but other than that she is fine. Oh I will say this Please make sure that your baby goes to a childrens Hospital were they have dealt with feeding cleft lip babies a lot times they will be like oh we know how to do that and they dont we had her at a reg hospital and they was learning how to feed her just like we was because cleft lip and palate is no0 something that they came across all the time now i direct parents to the childrens hospital were they know what they are doing plus all of her surgeries have been done there anyways b/c thats were her plastic surgeon is at. But I have no experienced any problems Mya is a twin so she ended up being smaller than her twin sister and with learning how to feed her she ended up being behind a little she is a happy little girl and you will be find just make sure yiu find the RIGHT plastic surgeon and not one who might wanna practice also Please try to not use an ENT to correct her cleft lip and palate. We only use an ENT for her ears because eventually she is gonna need tubes in her ear. But I they are not the best.n It is so much more i can help you with if you need anything like I said I will give you brand new Haberman Bottles if you want them. the Med Johnson bottles are good the nipple is very long so at times your baby might gag on it but it is a very simple bottle than the Haberman plusit is much cheaper.

Sana - posted on 06/21/2012

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Thanks for all your comments and encouragements! It's great to know that other moms can be so supportive! I am due in 7 weeks or so, she has a cleft lip on the Left Side. THe palate is yet to be determined exactly but it's possible complete palate. We have met with our surgeon now and he was very comforting. It's all a step by step process. Yes I believe ill be more cautious because of the cleft and palate but i probably would be anyways! This is my first!

Kellie - posted on 04/14/2012

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I remember that rush of emotions when i found out my twin baby girls were going to be born with cleft lip and palates, and I can relate to what you are going through. Its great that you have been reading and researching, I think that helped a lot. I can't imagine not having that time to prepare ahead of time. It is hard watching them go through surgeries and thinking of the road ahead but its amazing how fast they heal. My girls just turned a year old last week and they have their palate surgery on Tuesday. So far we have not had any other problems other than chronic ear infections. I remember being nervous too, but its amazing how strong they can be!

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