Cleft lip and palate

[deleted account] ( 14 moms have responded )

I have a 17 month old daughter who was born with unilateral cleft lip and cleft palate. She has had her lip and palate surgery and is doing great!

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Julia - posted on 03/31/2009

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Amy my son is 10 years and had a middle cleft. The doctors say that we were blessed that he did not have a cleft lip. He has had 15 surgeries, but that is only because our first doctor botched that second surgery and we didn't find out till three years later. it has been a long road but he is doing great. Your daughter will be great

Wendy - posted on 03/26/2009

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Hi Cheri, i haven't been on the computer much...I have been really busy, anyway, i was just catching up today and i saw that you had written to me.  It's cute that our daughters have the same name spelled the same way. 



How did your daughter's palate surgery go?  Is she recovery well?  We just went back to the hospital today since the new year for a check up with her sugeon and discuss her pre-palate surgery, no date given yet.  I hope soon.  We're taking a family vacation the first week of May, i hope it'll be after that. 



They didn't go in too much detail how to prepare for it.  But he did say that she should be able to drink exclusively from a sippy cup and not from a bottle.  I am a little stressed with that b/c i'm not sure if she is willing too.  I just can't get myself to wean her from her bottle when she enjoys it so much and it's also comforting to her. sigh!!  They'll also put in her tubes in then.  They didn't put it in sooner b/c they didn't feel the need and that's usually when the put the tubes in.  We went for another hearing test about 3 weeks ago and she seems to hear pretty good.  They think now that it could just be a lot of fluid and pressure in her ears, so once the tubes go in, it should help.  Is your Madeleine in arm restraints after her palate surgery?  Because they're not allowed eat solid food, put toys or their hands in their mouth.



Surprisingly and thankfully she hasn't had an ear infection, yet anyway....she's had a cold, but she was such a trooper...She have problems breathing with her congestion, but the doctor gave us meds for that. 



Anyway, you probably have a hands full...I hope all is well with you and Maddy, and any advice you can give me to prepare for my Maddy's palate surgery.



Chat soon,



Wendy

[deleted account]

Hi.  My name is Michelle.  My son Jesse was born in 2003 with a cleft lip only.  He had surgery at 4 months old and check ups every since.   I don't remember ever hearing about needing tubes in his ears or even anyone suggesting extra hearing tests.  Glad I found this site.  He has an appointment to be checked in June and if the Dr thinks he needs surgery, he gets it a week later.  Is is usual for the Dr to suggest to wait until right before first grade for a second surgery? 



 

Samantha - posted on 03/04/2009

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Hi my name is Sam, and I am new on here. But my youngest son, Pierson, was born with a cleft lip/palate, he is 2 1/2 now. He had his first surgery for his lip and first set of tubes when he was 10 weeks old. He had his second set of tubes when he was 6 months old, then his palate surgery when he was 8 months with yet another set of tubes. He didn't pass a hearing test when he was born, and didn't talk or babble til he was around 10 months. When we went to his cleft team apt at a year he was speaking at a 6 month age. We never heard momma, and dadda til 18 months after more tubes. He just had his left tube redone this past Nov, can't have a right one again because the hole that was left is to big for them, and he past his hearing test with just a slight lost. So they are waiting til we have to do another surgery before we rebuild the ear drum. He has to have speech, and will have some touch ups on his face in the near future, but its not important so we are not pushing it. We were told in Dec that they would not need to see him again til next Dec when we go to see the whole cleft team, but I am not holding my breath. I have no faith that his one tube will last that long. But right now we are living in the moment of no apts, and planning our wedding for this June 13.



I do have a question though, has anyone's child had a bowel problem? I don't think that the 2 are connected but just want to ask.



Thanks for listening.



Sam

Kathy - posted on 03/04/2009

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Hi moms! My name is Kathy and I am a mom but I was also a child with a cleft palate and lip. I was born back in the middle 60's and saw doctors in the Miami, FL area. Most of them were fairly new to their practices as well as being new to dealing with cases such as mine. It seems as if I spent my life growing up stting in the dr's waiting room for one thing or another. But I wouldn't change it for anything! With seeing the drs that I did as often as I did, I became like family to them. They also had children of their own in the same age range as I was. The only dr I saw that wasn't in Miami was my speech therapist and she was in Palm Beach (not far from where I lived!). I was not supposed to be able to take a bottle but my mom found that I could suck a nipple that was shaped as a thumb. These are now much more common than they were back then and are referred to as "orthodontic" nipples. I had no teeth in the front upper until after I was a teenager and a partial was made for me at the orthodontist. The reason was because I never developed a bone for teeth to grow on due to my cleft palate. I never had any problems with my hearing or had to have tubes in my ears. But my theory on that is to have them if they are recommended because my brother had many ear infections before he had his tubes placed in his ears. Afterwards no more problems!

If I were to give you any advise to help with your kids, it woulf be to treat them as normal as possible and love them beyond belief. I had a grandfather that made a point of doing special things for me that I could not do like the other grandchildren. EX: he would crush ice for me to suck on when the others would chew on ice. He would give me an extra treat when the others would have one that I could not eat This made for a special baond between us as well as made me feel as if I were as normal as the others.

[deleted account]

Hi Cheri!  I just saw that you have written to Wendy, and that you had mentioned that Madeleine's palate surgery is on March 11th, so good luck!  I hope she recovers well.



About her talking....don't stress too much, I'm sure after her palate surgery, she'll wake up one day and just start talking....and talking...and talking....and not stop!    Like Carley's plastic surgeion had explained to my husband and I, these cleft babies don't get their "real" mouth until their palate's are closed.  Then everything seems to fall into place.  And I'm sure you will be referred to a speech therapist.  I'm pretty sure all cleft babies are.  I know Carley has a speech therapist who we just saw yesterday and everything went great and we don't have another appointment until September. 



You'll see when she starts talking, you'll be so amazed!



Take care and good luck for ALL of you on March 11th!



Amy

Cheri - posted on 02/23/2009

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Hi Wendy, my daughter is also named Madeleine!



I'm just wondering why they waited so long to put in ear tubes?  That seems so long to wait.  Has your Madeleine had any ear infections?  Are they sure its a true hearing loss or just fluid in her ear?  If its just fluid then for sure she'll be able to hear once she gets tubes.  Either way its nice that she can hear out of one ear for sure, no doubt that's why she said mama so early!



My Madeleine had her tubes put in at 4 months and I noticed a difference in her hearing the same day.  She also got more vocal literally overnight.  She's had 5 ear infections already so I'm really glad she has tubes to drain her ears.  Its so nasty when they drain, but better out of her ear than in it where it can cause damage.



Now Madeleine is 11 months and though she said mama early (5.5 months) she doesn't say anything else yet which concerns me a little.  I sometimes think she is trying to say dada or bye-bye (she's looking at daddy or waving and her lips move but no sound), so I am convinced her cleft is slowing her down.  I figure she'll do better after her surgery (I hope!).  I keep hearing they catch up quickly, like Amy's Carley did.



Well good luck with Madeleine's palate surgery!  What's the date?  My Madeleine's is March 11.



Cheri

Wendy - posted on 01/21/2009

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Thanks for your repsonse.  Thank you, she's a cutie.  Your girls are cute too.  I have a little boy turning 4 soon, girls are way different than boys, i am so happy i had a girl, so cute to dress them up and all. 



Sick Kids are great, it makes this whole experience little easier to get through.  It was very hard giving her away for the lip repair, i tried not to cry, but i did.



Poor little Carley has to wear glasses, i am surprised at her age she keeps it on?  We still have to meet with ENT, i am assuming that will put tubes in her ears b/c it's almost routine for most if not all cleft patients.  I am hoping when the tubes goes in it will help her hear better.  Her right ear is 100%, so they didn't think that she would need hearing aid.



Thanks for your advice.  Keep in touch.



Wendy :)



 

[deleted account]

Wow, your little girl is gorgeous.  Don't you just love Sick Kids Hospital and all the staff...we are so lucky aren't we?  Of course, the palate surgery, being the second surgery, it is a little easier giving her to the nurse, and  the recovery went great just like when she had her lip repaired.  She really didn't have any discomfort, after a week, when we stopped giving her her codeine medicine which was sent home with us.  I hope your daughter has the same recovery.



Also, when Carley had her palate repaired, she had tubes put in her ears as well.  We were told that her hearing was as if she was underwater.  Plus, she has been wearing glasses since she was 8 months old, since her eye sight is very far sighted, so really she couldn't hear us properly for the first 12 months of her life, and not see us properly for the first 8 months of her life.....stress!  Has the audiologist mentioned tubes, would it correct your daugher's hearing loss?  Or will she need to have a hearing aid?  Poor little thing!



When Carley was 13 months old, we were told that her speech was very delayed, she was speaking at the 6-9 months level.  But then, in October, we had a speech therapist appt. here in Sudbury and was told that she is right at her age level with her speech.  So the speech therapist doesn't even want to see us until next month.  So, I'm thinking the tubes really helped her out.  One day she just started talking....and hasn't stopped!



I think Carley started getting her first tooth around the 6 month age, now she has three on the bottom, and three on the top, one molar and is in the process of getting her other three molars and one more tooth on the bottom.....yes, we've had some fussy days!



Take care and good luck with the palate surgery.....she'll be fine!



Amy

Wendy - posted on 01/21/2009

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Hi Amy, my daughter Madeleine is 7 months old and i am from Markham, ON.  We go to Sick kids all the time.  But our next appointment is not until March for her pre-palate apt.  So that will give us a break for a little while.  Mind you it's not a 4hr drive, but driving downtown still takes us an hour.  Anyway, things are getting easier day by day.  Started her on solid food for month or so now,  "fun"!  How was the surgery for her cleft palate?  I am concerned about her speech and hearing.  Becase the audiologist had told us that she has si"gnificant hearing loss in her left ear, which is where her cleft is.  She started saying "mama" when she was 5 months old amking baby sounds, but that doesn't mean she won't have speech problems.  Plus she doesn't have any teeth yet, when did your daughter's teeth come in? 

[deleted account]

Hi Denise!  I'm in Sudbury, ON.  Isn't it nice to have just regulalr doctor appointments and speech therapy, life seems so normal now.  I don't know you about you, but we were travelling every other week for the first year to Sick Kids Hospital in Toronto, ON (4 hour drive) to see her cleft lip/palate doctor and for her surgeries.



How is Lauren?  Is she a good eater?   How is her speech, I find with Carley once she gets saying a certain sound, she says all day and then moves onto the next one!



Take care,



Amy

Wendy - posted on 12/11/2008

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That sounds great! My daughter is right behind yours- She is 15 months old now.

After the first three months things got a lot easier. Lauren is wonderful!

We are working on speech as well, not getting a lot of b or d sounds.

She won't see her cleft palate team again until May.

Would love to know where everyone lives- we are in Raleigh, NC

[deleted account]

Carley is doing great. She really never had any trouble eating or drinking, we used the haberman bottles, and then with table food, she just loved everything, and she still does like most food. Now it's just speech therapy, but our speech therapist said she doesn't need to see us for 6 months since she is doing so well. Life seems so normal now, just regular doctors appointment, then cleft and other appointments about every 6 months. It's so nice!

How is your little one?

Take care,

Amy

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