Cleft on the Soft Palate

Angela - posted on 07/24/2009 ( 38 moms have responded )

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Hi everyone, My son Ethan was born March 24th with a cleft on his soft palate. They actually didn't see it until he was 2 days old. So you can imagine how shocked we were. I am just looking for some support as my family and I go through all of the appointments and eventually the surgery. Any advice would be great, too! :)

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Ashlynn - posted on 01/02/2014

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hi I was wandering if anybody makes specialized baby pacifiers for babies with cleft palate???

Kayli - posted on 10/04/2011

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The 26th is a good day to be born ;) thats my birthday! haha.
But definately try to pump breast milk for as long as you can! But know that if you end up having to switch to formula there is nothing wrong with it. I had so many people look at me with dissapointment when they asked if I was breastfeeding and I told them I had my daughter on formula and it made me so mad! there is nothing wrong with formula yes breast milk is better, but sometimes you dont have control over things! And my daughter is in the 95 percentile with height and weight! Cydni had her surgery at 10 months at the Calgary Childrens hospital. It was stressful and scary, but we made it through! Just remember that these kind of surgeries have come a long way! You and your special little one will be well taken care of and everything will go just fine! Wishing you all the best tomorrow at your appointment!

Tasha - posted on 10/04/2011

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It is very nerv racking when you start with all of the follow ups! You will be amazed at what information they will come up with, by what you tell them. There maybe alot of information they will give you if your husband/friend can be there it helps out alot. Remember you aren't going to always remember everything so extra ears are great or if you can take notes.
You can feed your baby breast milk or formula whatever she will take. Breast milk is always better for babys. It is great that you can breastfeed her! I couldn't with our daughter you are very blessed. Yes that is right they are usally between 8 month to a year before they will do surgery. My daughter will be turning 7 in december and you cant tell she ever had a cleft pallet! Just remeber you are never alone and God gave you a strong little girl in his own image! Please let us know how your meeting goes tomarrow! Have a wonderful day!

Kayli - posted on 08/10/2011

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My biggest advice, dont stress to much. Your son will pick up on it and he'll be stressed. My daughter had a cleft in the soft palate, her surgery lasted 1.5 hours, and we were in the hospital for only 4 days! So far we havent noticed and problems with speech (she is only 14months so shes not really talking) but with her sounds they havent noticed and problems thus far. So good luck with the surgery! Im sure everything will go great!

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Cynthia - posted on 07/14/2014

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i had wondered about the pacifier thing for my son as well however i had been told that it wouldn't be good to even give him one because he can get used to it being in the palate area IF he could even keep it in his mouth, which he couldn't because of no suction.

Ashlynn - posted on 01/02/2014

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I my name is Ashlynn, I have a 3 month old daughter who was born with a soft cleft palate as well. we are using the Haberman bottle feeder too. those things get so irritating sometimes. I have been trying to look around and see if their are any other types of bottles out their to use. I wish they made binkies for cleft babies!!!
any ways I know what your going through, if you have any questions or just someone to talk to just give me an email:)

aromeri@yahoo.com
-Ashlynn

Cindy - posted on 09/19/2013

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My son was born with a small cleft on his soft palate. He is 22 days old today. Luckily they found it right away. We have been using the Haberman feeder but we have good and bad days. I would love to talk to other moms that have experienced the same thing. I need strength to get through the hard days but I promised myself that I would continue fighting. I want to give my son a lot of love, I will talk to him everyday and I will encourage him to do better everyday! Please if you want to connect please send me an e-mail and we can help each other through this experience.

Cindy
sinde28@gmail.com

Angela - posted on 08/31/2013

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Ethan is doing great! He just started pre-school this year. We are actually on our way to the ENT to determine if he needs another set of tubes. He hasn't had to have speech yet, but his voice is very hoarse. They said he probably has nodules. Anyone else have this???

Michelle - posted on 08/30/2013

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How is your child doing? I have a 6 year old that was born 8/6/07 with cleft of the soft palate. She is in speech and OT I would love to stay in touch. i have face book and also email....
katiekyle0709@gmail.com
fb-keithmichellebedingfield

Thanks so much!!

Jennifer - posted on 10/23/2012

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Hi I actually live in northwest suburbs of Chicago. My daughter was born also with a soft cleft palate in august. Was your son slow with weight gain? How did his surgery go? Anything I should now and be prepared for? The cleft palate clinic wants her to be drinking put of a cup by 7 months. I'm stressed about that. How did your son do as far as pain and denning out of a cup and eating baby food right after surgery? Hope you can help me:)

Jennifer

Michelle - posted on 01/10/2012

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How is everyone doing? My katie girl just had another set of tubes put in today(5th set) She is going to preschool. We go to othodinics(sp?) next month. They are wanting to repair her palate cause it is not wide enough. The speech therapist (specialist in the palat office) wants to repair the palate cause it is not long enough so her air way from her palte to her throat isnt closed off. I was just wonering if any of you had heard of these issues....Also just want ot see how everyone was doing. Hope everyone had great holidays

Angela - posted on 10/04/2011

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Congratulations on your little girl! I actually just had my 2nd little boy on the 27th! :) My first born had a cleft on his soft palate. He had his surgery when he was 7 months old. I wasn't able to breast feed, so I pumped for 5 months. We had to alternate breast milk and a high calorie formula, because he wasn't gaining weight. I know things are really stressful and difficult right now, but I promise it will pass and everything will be great. Please keep us posted and I will be thinking of you!

User - posted on 10/04/2011

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Hey there!!
My daughter was born last week - 26 of September 2011. She was born with a cleft of the soft palate. The doctor adviced me to breastfeeding - She's drinking, or so I hope. Is there anyone with a sucses story on this. Tomorrow we are meeting with the specialist. I'm scared to hell... Those of you that are feeding your children with the harberman feeder, what milk are you giving your baby? Formula or are you trying to pump out breastmilk as long as you possibly can? I read your stories, so the earliest they can try and fix this is anything from 8 months to a year???

Angela - posted on 06/14/2011

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Hi Meagan!
I can definitely relate to what you are going through. They didn't notice my son's until he was 2 days old. Ethan had a horrible time gaining weight. We had to alternate breast milk and a high calorie formula. I too, had to pump. We used the Nuk Orthodontic bottles with the level 2 or 3 nipples. Those seemed to work best for him. I used the Haberman for a little while until they recommended the Nuk. We switched because the Habermans were too expensive and we were only given one. Ethan had his surgery when he was 7 months old. Once the surgery was complete he started gaining weight a lot better. He is now 2 and he is in the 50th %tile for height and weight and he talks all the time. He never needed speech therapy, but they will continue to monitor him every year. We are from the Chicago area, so he had his surgery at Lutheran General from a Children's Memorial doctor.

Ethan did have the nasally breathing up until the surgery. He would also choke when he spit up and would turn almost purple until we sucked it out with a nasal aspirator. I was worried when they wanted to do the surgery at only 7 months, but I am so glad we decided to do it. He wasn't very mobile then and so after the surgery when he had to take it easy, it wasn't hard to keep him occupied. I would think the older they are, the more challenging it would be.

Please keep us posted and let us know if you need anything else. I was so relieved when I found this group and knew that I was not alone.

Take care,
Angela

Meagan - posted on 06/14/2011

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oh one other thing does any of you babes get really stuffley nasely when breathing?

Meagan - posted on 06/14/2011

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Thanks a bunch Tasha I I forgot to mention,
Emily she was also prem born at 34wks and 5lbs 6onz and we had no idea about the cleft while prego and yes I am slowing coming to terms with the whole bfing thing but I am also pumping and my 14mth old is still BFinG and I think that as really helped out with keeping my supply up -somewhat along wth taking fenugreek.And I still have'nt heard from anyone that is really disappointing but I am in Peterborough Ont.soo ?? and we have to go to Toronto for the surgery,I am sure everthing will work out.
Bye for now :)

Tasha - posted on 06/13/2011

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It is very hard to go through this situation alone.. And I am sorry you are. That is what makes this so great to talk to other mom's that has been in the same situation as you. My daughter is 6 now and I dont know how much has changed from then to now. I know they usally wait until your baby is around 1yrs old before they repair anything. We used the Haberman bottles and we loved them. I believe it is very hard to BF because of the cleft they are unable to have the suction so don't get enough nutrients to gain weight. Right know the main focuse is to have your wonderful baby gain weight and be happy. I know it is a hard time to understand everything but God would never give you something you can not handle! I know you want your baby girl to be "fixed" but it takes one step at a time. I will be praying for you, your family and the doctors that you will receive a call from a wonderful doctor and they will give you all the answers you need. If you have any other questions please feel free to ask! Just remember to take one day at a time.

Meagan - posted on 06/12/2011

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HI ALL!! my daughter was born Apr.5 2011 with cleft soft palate right where her uvela is small hole my ped. didnt notice it for 2WEEKS!! and so she lost alot of wieght untill we tryed the Haberman and it work wonders! but since than i hve switched her to Dr.browns normal/classice nipple level 3 and "m"m in the meleda works great too I have been try Bfing but from everything that I have read and been told it most likely is'nt possible :( she is my only babe out of 6 that I have'nt BF and I am soo bummed out now another thing that I am dealing with is the 5 counties in mr area is not returning ANY of my calls and according to my ped. they have to look b4 we go to sick kids to repair it so I dont know when the surgery will take place nor do I have much help with this situation and my ped doesnt know much about cleftes and he has to refer me to someone else soo anyone with some tips advice and experiance that would be helpfull like has anyone ever BF in this situation?how old do they do the surgery?what kind of bottles are you using? all will be helpful THANKS A BUNCH :)

User - posted on 01/09/2011

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Hi Angela,
I just became apart of this site.. my youngets is 3. she was born with a cleft of the soft palate, she is also hearing and visually impaired. If you need some support, I would be happy to assist in that., you;re welcome to find me on facebook, etc.. with having 3 children, things get crazy.. my planner is mainly dedicated to amanda's medical appts. with the cleft team, speech therapy, eye specialist, ent, etc. it
s stressful, but ya keep going..I sincerely hope your son's surgery was a great succes.. :)
Milinda

Lisa - posted on 01/17/2010

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Hello everyone. My daughter Kayleigh was born 08/17/2007 with a cleft palate. We were in shock, but the pedertician was very helpful. They tried to help me breast feed which didn't work out. Then they introduced us to the Haberman nipple. We loved it. The only trouble we had at first was keeping my daughter awake to eat. She lost alot of weight and the dietican at Children's Mercy in Kansas City, MI had us add alittle formula in with breast milk I pumped. She finally gained weight.
They had me train her off the bottle starting at 8 months. We had to use a cup with a lid similar to the lids on coffee cups. They didn't want her to be sucking at all. After the surgery they don't want her to pull out her stitches. They did surgery after her first birthday. They had to put splints on her arms since she sucked her thumb. That was a god send. After surgery no thumb sucking and no bottle anymore.
Kayleigh is doing fine now but we are having to go to a speech specilist. By 4 years old if she doesn't improve they will have to do more surgery. Her palate is short.
Believe it or not your son will adapt and be fine. He will find a way to eat and drink. Kids learn fast. The appointments are not that bad. If you have a good doctor and his staff. If they are like our doctor they give you all kinds of info to read or websites to go too. Just ask them.

Lisa - posted on 01/01/2010

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Hi my name is Lisa and I am a speech and language therapist for the Maryland Infants and Toddlers program. I work with alot of cleft palate babies and find that the haberman nipple is the best early on. If a cup is too hard to work with after surgery try a spoon. It takes awhile but maybe easier. Check out your local area- all states have Infant and Toddler programs- Maryland is free- some states are on a sliding scale. In Maryland we go to the house and can help trouble shoot with our families. Good luck.

Tonya - posted on 12/30/2009

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Hi, my son kaeden was born with unilateral cleft lip! we took him to the best surgeon in the country Dr. court cutting from new york city! my son has only had one surgery and so fr so good! he is almost 3 now and had his sx @ 4 months old> his speech is amazing!! we have had no speech therapy and nothing extra done except for his 1 and only surgery!! this dr. is the inventer of the NAM which was invented for cleft lip kids! he's done an amazing job with my son and i would recommend everyone looking into him as a dr. for their cleft lip baby! we had 2 travel to c him but it was so worth it!! good luck and i hoe it all works out for you and your precious baby

Rachel - posted on 12/15/2009

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Hi Angela! I obviously don't check this page very often, since I'm seeing your post for the first time. I can definitely relate to your shock--our son was 8 days old before the doctors noticed his cleft (also in the soft palate). He's had a lot of feeding issues, though you would never know it since he weighs around 34 pounds at 23 months. He had his surgery this past March (at 14 months old).
Hope things are going well for you :)

Angela - posted on 11/13/2009

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BTW Michelle, I will add your email to my address book! Here is mine... amann07@gmail.com

Angela - posted on 11/13/2009

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Hi! He did have the surgery on November 2nd! It was so hard... I hated seeing him in so much pain. Nothing I did would make him happy. We bought a bunch of singing and dancing stuffed animals at the hospital gift shop, lined them up on his bed, and kept hitting play. It was the only thing that kept him from crying! They allowed him to take his bottle the next day, but he did not want it. He still does not want it. I am thinking it has to feel weird for him. We have been feeding him with the open cup, because he doesn't want a sippy cup either. He got his arm restraints off yesterday! YAY! The doctor noticed a small tear in the very back, but he said it should still heal nicely. We have to go back in 2 months for them to check on it. After his appointment yesterday, we came home and fed him dinner. All of the sudden he started sneezing and food shot out of his nose! That hadn't happened since before the surgery. Scared the crap out of me!! I called the surgeon right away. He said that the very back may not be strong still and that food may still get up there. He still sneezes a lot, but nothing has been coming out. Do you ever remember that happening? It makes me so nervous, because I do not want him or me to go through the surgery again!

Michelle - posted on 11/13/2009

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hi Angela,
Sorry I have been without internet for a while. I see that it is past the 2nd. Hopefully he got to have surgery. I will just let you know that is very hard after surgery. Katie had to wear arm restraints for 2 weeks. (so she would not put her hands in her mouth) She learned how to take them off. We had to watch her really good. She would not sleep in her crib. We had to sleep by her side in her little bouncy seat. She lost some weight cause we had to feed her from a syringe. It was hard but we got thru it one day at a time. I hope everything is going great for you. We actually took her off the passy and gave her a regular bottle after 2 1/2 weeks. She did great. We actually didnt give the passy back to her. She had been without for 2 weeks so it was ok. Let me know how everything is going. You can e-mail me at katiekyle0709@yahoo.com if you would like. I love to talk to momies that are going thru the same or similiar situations/or that have been thru it already. Thanks again Michelle

Karamel - posted on 10/22/2009

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Wow! Elias had both cleft lip and palate. He did well after the lip repair but trying to get him to eat with the opterator or without it is tough. He wants it but doesn't like it after 2 or 3 spoons. the OT hasn't been much help. What do you guys suggest?

Angela - posted on 10/16/2009

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Hi Michelle! Thanks for writing! Things are going good. We scheduled his surgery for November 2nd. He will also have tubes put in at the same time. We have gone to 2 food evaluations and the speech therapist said that he is eating very well. We switched to level 3 nipples, and he is eating great now. He isn't in the bottom 1 percentile anymore! :) I definitely know how you feel when you said that it was the scariest time in your life. I tear up every day just thinking about it. I can't wait for it to be all over, but at the same time I am so scared! If you have any advice for after the surgery and what to expect, let me know!! Thanks again! :)

Michelle - posted on 10/08/2009

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I know this is late...I just found out about all the site and I am new...My daughter was born with cleft of the soft 2nd palate. We didnt find out till the next day. It was horrible at first but we learned to cope with it. We had prayers and family. We tried to use a regular bottle but she was exhausting her self to eat. She was not gaining weight. We finally got the haberman and it was great. She was born 8/6/07 amd had her first surgery at 3 months old. She had to have tubes put in her ears. then in march of 08 she had her palate repaired. The most scariest time in out life. Thank you Jesus that she came out fine. She had her 2nd set of tubes put in the same time. She is now 2 and is doing great...You cant even tell that she has cleft palate. We go for a speech e-val at the end of the month but she talks great.... I was just wondering how everything was going for you....The appts do getting better and their are hard days and good days. My prayers are with you. Keep in touch and God bless

Angela - posted on 08/15/2009

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Ethan was born at 6lbs and 5oz. He is almost 4 1/2 months and weighs 12lbs. We are supplementing with a high calorie formula, too.

Thanks so much for all of the advice! Please keep in touch!!

Casey - posted on 08/14/2009

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Jack is a very healthy baby who has had no problems putting on weight (apart from when he was tube fed at the hospital). He was born at 8pound 1 and at four months he weighed 12 pound. feeding was slow to start with but he can now drink a bottle in 10 minutes.

Tasha - posted on 08/14/2009

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My daughter Alysiah was also born with a cleft in her soft palate. We didn't know either until they were cleaning her up after birth. Worst feeling you will ever feel about your baby.

We had the problem too of her not gaining any weight she could still fit in newborn outfits when she was 4months old. It was taking her 30-45min to drink her bottle and she was burning off what she was eating while she was feeding. (we were using the haberman also.) What we found is that the whole was not big enough on the nipple and she couldn't suck hard enough! So we warmed up a needle and made the holes bigger. In the mean time she still had to gain weight they put her on a high calorie formula. That help greatly.

Glad to say she is doing great she is now 4 1/2 and you would never know she even had/has a cleft palate.



There is so much advice that can be given to you or any new mom with a cleft palate baby.

Take every advice with consideration it may or maynot work for you or your baby. Only you and your baby know what is going to work.

If you ever need to talk to someone who has been there, I am more than happy to help you out with any questions. Or just need an outside view..

I wish you and your family peace!

Angela - posted on 08/14/2009

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Cassie, Is he having a difficult time gaining weight? Ethan is in the bottom 1 percentile.

Casey - posted on 08/14/2009

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Hi Angela.

My son Jack was born on the 17th march with a soft cleft plalate, which was picked up as soon as he was born. I am in Australia and I stated using the haberman teat but was then moved onto a teat called a Chu Chu easy feed teat. These can be used with most bottles or a special bottle that you can squeezy. I find that these work alot easier than habermans.

Jack is doing really well and is booked in to have his cleft repaired on the 1st December.

Sarah - posted on 07/29/2009

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I haven't tried a sippy cup yet because our doctor told us nothing can pass his lips for 2 weeks after the surgery. Our doctor gave us this plastic cup that we can use to feed him after the surgery. We have been using that. It isn't very successful for us. He gets frustrated because he isn't in control of his food. It is also very messy. As much as I love the habermen feeder, I don't plan on using it after the surgery. I will try to ween him off the bottle.

User - posted on 07/29/2009

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My daughter was bornwith a cleft in his hard and soft palate as well. She is due for surgery in October.
Once I tried the habermen feeder I could not go back. Boy they are expensive though. I researched many different places for the cheapest prices for those bottles. My cheapest price was straight from the Medela company 1-800-435-8316. I just called them but i had to pay i believe 25 dollars for shipping. They ship fast though. They do not sell those bottles from stores where in live.
My daughter hated eating baby food when I started her, I think because it would get in her nose as well. Once I started her on chunkier foods she then began to enjoy eating food. We use the Nuby sippy cups with the short soft spout.

Angela - posted on 07/28/2009

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Sarah- We were given the Haberman, too, but they took it away from us! We LOVED it! They said that it was too expensive to keep replacing it. We had to go to the store and try a bunch of different bottles until we found one that worked. During that time, he lost some weight and now he is in the bottom 1%. We have been using the NUK orthodontic bottles now and they seem to be working. How is the spoon feeding going? We just started and he starts sneezing and then it comes out his poor little nose. :( Any tips? What kind of cup are you using, too?

Sarah - posted on 07/24/2009

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My son was born with a cleft in his hard and soft palatte. We didn't know either. It was very stressful in the hospital. Just realize that he will adapt and be fine. Our son is almost 7 months old. He sucks down food like the best of them. We had success with the haberman nipple (we have replaced them once since he was born - he will start spitting up a lot which is an indication that the whole in the nipple is too big and needs to be replaced). He is even eating food with a spoon. Surgery is scheduled-- he will be 9 months old. Our doctor has us practicing with a cup for feedings after the surgery. Just make sure you find a doctor that you are comfortable with.

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