Would like some info please!

Amanda - posted on 06/20/2009 ( 10 moms have responded )

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I'm 24 weeks pregnant and just found out my baby boy will have a unilateral cleft lip and palate. Just wondering if you could help me out and let me know happens from the moment you give birth and around the age the surgeries happen. How different is it to feed and can they have soothers?? Thanks so much!!

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Donna - posted on 10/08/2009

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My son had his first surgery when he was 2 months old, he was born with a unilateral cleft lip/palate. He was born premature so that is why the surgeon waited so long to do the first surgery.They wanted him to put on more weight. His second surgery was the palate repair and he was 5 and a half months old. At 13 months old he had a lip and nose revision. When he was 25 months old he had a palate revision and at 3 and a half he had another lip revision to remove scar tissue. He is due to have his bone graph between the ages a 6 and 7. He will be 5 in Feb. I used a bottle called a Mead Johnson for him, and when you introduce solids make sure you have a burp cloth handy it gets messy. I used a bulb syringe to help keep his nose cleaned out.

Billie Jo - posted on 09/12/2009

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he will have surgry between 6weeks to maybe about 4 months they will fixed his lip first. he will have diff bottles..he will not be able to breast feed. most of the time the hospitals will give u the bottles.. when its time to fix the roof of the mouth it would be aroud 6-8 months.. my son is 11 months and just is now having the top of the mouth now... if u need more info just ask.. best of luck to u and ur son

Jessa - posted on 08/29/2009

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Hello Amanda! My 3 year old daughter, Chloe, was born with Cleft lip & palate in 2006. My husband was also born with cleft so we knew there was a possible chance in every birth. She is our oldest and she's the only one born with cleft. My other daughter will be 2 on Halloween and I am expecting our 3rd daughter in 4weeks! They are both 100% healthy. Since we knew that Chloe was going to be born with cleft, I did a lot of research online so I knew about what to expect when she was first born. I was so amazed but scared of course. I was only 17 and still working and going to H.S.

For about a month, we had plastic bottles that we squeezed her milk into her mouth with since she could not suck. After that we had Special Needs bottle that we had to put a "valve" in the nipple and with the slightest movement of her tongue, the milk would come out. They were hard to keep clean since we only had 2, but we knew that it was what she needed until her repair of her lip. She had her first lip repair when she was 3mos and 3wks old. I was so emotional because here was my helpless baby having surgery and I couldn't take her place. It was awesome though! She looked so wonderful after surgery. I couldn't believe that it was her!! They said that 95% of the cleft babies stay in the hospital for 4days and she was in the hosp for 2! Her palate repair was when she was 7mos. They expected her to be in the hosp for 3days and she left the very next day after surgery. OMG she was so strong and pulled through everything so fast. She has had 4 different sets of ear tubes from the time of 3mos until now at 3yrs. She has had 2 diff. dental surgeries and recovered faster than expected. I will tell you that when we laid her down to sleep, 80% of the time we had to put her in her car seat carrier for her to sleep because of all the spitting up of milk she did. Doctors say not to lay them on their belly but Chloe's doctor said she would be fine since she spit up A LOT. Or we would put a pillow or two under her mattress to prop her up so she wouldn't spit up and start choking.

She will be starting Pre-K next year in August so her next "major" surgery will be sometime between April-June. She will have her nose repaired and lip again. Then another surgery about 8yrs old. We are so excited. She has been through so much but she is so positive about herself and her dad and I have taught her since she was 9mos old that she has a "boo boo" on her lip but everyone loves her just the way she is! She's so open about it at 3yrs old and doesn't have a shy bone in her body. =) Hope that you have a wonderful time with your little one once he arrives. Always think positive. Good Luck!!

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My daughter Carley was born in June, 2007, with uniltarel cleft lip and palate and she had her lip repair when she was 6 months and her palate repair at 12 months old. The Haberman bottles are the best invention ever and are so easy to use once you get used to them. Congratulations on your pregnancy and hope you feel great all the way through. I totally agree with Lacey Stitely when she wrote that her son is stronger than she could ever be, I feel the same way with my daughter. Couldn't have been said better!

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Honey, you will be just fine! When you meet your baby, his cleft won't matter to you. Baby will end up teaching you what he needs and how to help him. A mom just knows! Not to say it won't be a little tough in the beginning (like all new babies) but if this is your first child then you will not know any difference then a new parent of a baby without a cleft. It is a learning experience and each one is different from baby to baby. I was told my son would have ear infections and cry all the time. He would be sick most the year and not get his top teeth. I was pretty scared of the unknown. But let me tell you, I planned for the worst and got the greatest gift! He (no joke) has never had a ear infection and only has had one little cold last winter. He sleeps through the night and has both his top front teeth. My son has help me grow as a person and a mom. He is a wonderful child and is stronger then I could ever be. We mother's can tell you our stories, but you are going to have a bunch of your very own soon and I hope you will share them with us! =0)

Katrina - posted on 07/29/2009

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Hi. I'm new to this group, but I think I can give you some advice. I'll start by saying congratulations on your coming baby!! A child with a cleft is a little different. Don't be shocked when you see your baby for the first time and allow yourself to feel any way you need to. I have a daughter with a unilateral cleft palate and lip and I didn;t know she would be born with it. It was not the most pleasant first meeting with my daughter but I got used to it. My daughter is now 16 years old and very few people can tell she was born with it. She had her 1st surgery at 3 months old and that's when they repaired the lip. The palate was mostly closed at 10 mths. There wasn't enough tissue to finish it so it was patched with a piece of bone from her hip at 9 yrs old. This is only a guideline of a time frame. There will be a lot involved. Speech and ear issues usually come with the cleft.My daughter had a plastic surgeon, special dentist, ortodontist, speech therapist, audiologist, oral surgeon, and I'm probably forgetting someone. I can tell you about a few things I picked up along the way to try and make things easier.



As for feeding, I was given some bottles you can squeeze to push the milk in, but they're almost impossible to sterilize and they're expensive. I found that if you buy the 4 oz. playtex nurser and the 8 oz bags, which will stick out the bottom so you can gently squeeze the bag, is cheaper and easier. And sterile.Hold him in an almost sitting position to feed him and the milk will be less likely to go the wrong way. He may not feed very much at first as it's a lot of work when there isn't any suction in the mouth. But it gets better. When my daughter was 5 mths old, the dentist fitted her with a plate for the roof of her mouth and she was able to suck when it was in. As for soothers, I discovered that the orthodontic ones just slip out. Try one that is more oval and it may stay in. It depends on the cleft. The oval one sort of slipped into her cleft and she more chewed on it, but it was still soothing to her. But truthfully, be careful. After a surgery, it won't be comfortable for him to have anything near the sore lip. I was told to not give her a soother so she wouldn'r miss it when she had a surgery. But if your son needs one, do it. Once the surgical site is less sore, he may want it back. That's what I did. After the surgeries, it's important to keep his hands away from the site. What I did, is I borrowed some tongue depressors from the hospital and taped them to some face cloths and wrapped them around her elbows so she couldn't bend them to reach her lip. They don't like it, but it keeps the site clean.



My daughter is 16 and is still dealing with some issues. In a year's time, she will have a nose job to fix it, it leans a little to the right from the hole. She has her 2nd set of braces on and will eventually get a tooth implant because the hole meant a missing tooth. I know this sounds like a lot, and it is, but I went thru this as a single Mom and it's all spaced over a lot of years. It doesn't all happen at once. It gets easier. I have been very open and honest with my daughter about her cleft, and as a result, her self esteem doesn't seem to be effected. The boys think my daughter is pretty and she currently has a boyfriend. If there's anything else I can help you with, please ask. I've been thru most of it at this point.

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My daughter Delores was born in July 2008. She had a bilateral cleft lip and a unilateral cleft palate. We did not know before she was born. The first thing they did was send of to the childrens' hospital to meet with a team of specialist. They assessed her and got her a bottle she could eat out of. I was not able to brest feed due to her cleft, but I did pump and give that to her in a bottle. We used a Pigeon Feeder Bottler for her. The difference between it and the Haberman is that the Haberman you squeeze the milk into the babies mouth for them. The Pigeon has a pressure valve in it, so when the baby chews on the nipple it squirts the milk in their mouth. She was never able to take a soother. Delores had two surgeries to repair her lip because the cleft in her lip was so severe. The first one was at 7 weeks and the second one was at 5 months. After both surgeries we had to syringe feed her. We will have two more surgeries in the next year. One will be to repair her palate and one will be to add some cartilage to her nose. (her nose ended up being very flat when they repaired her lip) Then when all of her top teeth come in the dental surgeon will repair her gums. She has also been under the care of a nutritionist and an audiologist, Her weight (or lack of) and hearing are both side effects of her cleft. She will also start speech therapy next month. I have a great team of doctors and I am so thankful to have them.

Ludmilla - posted on 07/12/2009

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Welcome to a very unique club. It's fun and hard all at the same time. Surgery usually goes by the rule of tens: 10 weeks, 10lbs, and 10 on the hematocrit. I was 19 weeks when we found out my daughter had a bilateral cleft lip and palate. Haberman bottles are cool. Depending on the severity of the cleft, some babies cannot use pacifiers. My daughter's mouth couldn't support it. Email me if you have any questions. Been around the block, too :-)

Sharon - posted on 07/12/2009

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Hi Amanda. My son was born with a unilateral cleft lip and palate on 10th September 2007 by c section. we didn't know before he was born so it was a big shock. Ben was put in special care and was looked after very well there. he was fed on a Haberman bottle which is very easy to use once you get used to it, you squeeze the milk into the childs mouth and allow them to swallow before you squeeze again. effectively you are doing the sucking for them. Ben never used a soother but laves his blanket. Ben had his first operation when he was about 12 weeks old he has his lip repaired the operation didn't take too long but felt like forever. he had his pallet repaired last year and was able to use a "normal" bottle after that. he is now using a sippy cup. he still dribbles a lot but its not too bad. he didn't have much trouble getting his teeth and only the ones around the cleft that are a bit crooked and out of place, but he has a lovely smile that does my heart good. he is getting speech therapy and is getting more vocal every day, he will have gromits fitted on July 30th so that will help his speech. I hope I haven't given you too much info and if I can give you any more help please e mail me at sreilly@live.ie

Denise - posted on 07/01/2009

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I am sorry I didn't get back to you sooner. In my situation my son was born at home so we had to wait until he was 6 weeks old to have his lip repaired but from what the plastic surgeon told me they do the surgery the day after the baby is born. Then at around 7 months he had his palate repaired. Then around 6 or 7 if your son needs it they will take bone frome his hip and repair his gum line. Feeding wise you will not be able to nurse him but you can always pump if you want but we used a Special Needs bottle also known as a Haberman bottle. There are other bottles out there but I thought the Special Needs bottle was the easiest, I am sure the hospital will give you a couple. Soothers you can try my son sucked his fingers, he had a hard time with the soothers. If you have anymore question please feel free to ask.

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