Cleft palate- use of pacifier question

[mia's mom]

Hi there- my daughter has a bilateral cleft of the soft and hard palate. She loves her pacifier and has started to find her fingers as well. She's 6 weeks old- Do I need to nip her use of the pacifier now considering she will be undergoing the surgery at 12-18 months and she should be off a bottle/nipple by then? My son never liked the pacifier so I don't know when kids normally stop using one. My nephew seemed to use his way past his 1st birthday so that is why I am concerned. Thanks, Sandy

[pkett2]

My Dr. told me not to even get my child started on the pacifier. I guess after the lip surgery is done they can't use it. She said that they already feel miserable, why take away their comfort. My son has did fine without it. i just used it when he was real little in case of emergency, like when we were out at the store & wouldn't stop crying. I never got him hooked.

[samjune79]

I wish my son could keep it in his mouth. He is really fussy and now has his thumb in his mouth, but he doesn't suck it he chews it. I did have him sleeping with up until his lip surgery and then he didn't want anything to do with it after that. IMO only I think you should just give to her and you can break her of at the time of her surgery. She will be sore and will not want it anyways and she will also have pain meds so she will be comfortable.

[jacksmom]

Sandy, Jackson used a pacifier up until his palate repair. I was concerned about how we would make it without it after surgery, but he didn't want ANYTHING near his mouth, much less the pacifier. Since then, I have tried giving it back to him on a few fussy nights, but he doesn't want anything to do with it. So, I would say that if it comforts her now, let her have it. She may even grow out of it way before surgery. You just never know! Most of the plastic surgeons we talked to did the palate repair between 6-9 months. So hopefully you won't have to wait too much longer! It will be here before you know it! Good Luck!
Allison

[mia's mom]

Thanks for all of the replies- she really loves this pacifier- she doesn't need it all the time, only when she wants to go to sleep. I guess my son was like that- only I would nurse him to sleep.

Allison- that's interesting about the palate repair. The two PS that I saw said they would do the surgery between 12-18 months to give the jaw time to grow and so that there would be enough skin to cut (I'm sure I'm not saying this right!). One PS was adamant against doing it any earlier- and my daughter has breathing issues too so we kind of wanted it earlier. I have read recommendations about having the surgery earlier than that as well. I wonder why the discrepancy? I'll have to ask at the next meeting.

[jacksmom]

I have figured out that all of these plastic surgeons are so different! It has amazed me that something can be done so many different ways, and all of them be successful. All of the PS's we saw were adamant about having the palate repaired before 12 months, so that their speech develops normally. But, with your daughter, things may be different because of the breathing problems and smaller jaw. I don't know much about that aspect of things, but that would be my guess.All we can do is put our trust in the doctor's we choose, and go by what they say! It gets a little frustrating at times! Have a good week!
Allison

[samjune79]

I was really surprised when my PS told me that Kyle could have his surgery at 6 months because everyone I meet tells me that their child will wait until they are 9-12 months old. I was really scared that the PS schedule too soon, but it seems that my son has smaller holes in his bi-cleft palate and that is why he can have his repaired so soon. I'm glad because it seems he really wants to eat solids now but he doesn't like the food going up his nose.

[heather]

My son Eyson has used his pacifier since birth. He was born unilateral lip and bilateral palate. He can't suck on it but he absolutely loves it. I'm not too concerned about taking it away. He will ween himself from it once he has his palate surgery. If your daughter likes it let her use it. It won't hurt her. You can take a pacifier away but fingers are always there.

[msoto]

HI THERE. MY SON HAS BIL-CLEFT LIP & PALATE. HE LOVES HIS PACIFIER BUT HE CAN'T HOLD IT INSIDE HIS MOUTH, SO I WAS WONDERING IF YOU ALL KNEW ABOUT A BRAND/SPECIAL PACIFIER THAT COULD HELP HIM. THANKS

[mookie59]

My granddaughter (we have custody) has used a paci since birth - even though we had to hold it in at first.

Two weeks ago at age 10 months she had her hard palate repaired. (We've already had lip surgery at 4 months & soft palate at 6 months).

From the moment of being in the recovery room to today she refuses her paci. Not that I've pushed it on her but in moments of desperation I've offered it to her. She takes it and gives it a fling. And this is from a child who loves her paci and used it immediately after the first two surgeries.

I think this time she's weaned herself of it. She doesn't even stick it in her mouth if she finds one in an old toy box.

I wouldn't worry about your little one using one. Eventually she'll give it up on her own.

[heather]

Eyson couldn't keep his pacifier in at first, either. But it didn't take long for him to figure out how to use his tongue to hold it in. I've found that the Nuk brand button pacifier stays in really well. The shape of it is a little different and it's turned out to be the only pacifier he will take. If it's not that specific kind he throws it across the room. I should sign him up for baseball. The kid's got an arm.

[ssmehyl]

Hi. My name is Stacy. I'm new to this forum. Our son was born with a bilateral incomplete lip and bilateral hard and soft palate. We have our first surgery next month. I'm scared to death with the whole pacifier thing. Bauer loves his. He's not obsessed with it, but uses it when he gets irritated or is going to sleep. He actually sleeps with it. Although we can take it out after he is asleep and he's fine. Anyways, any thoughts? I've been told I can use the Haberman with cotton stuffed inside, but he realizes really quick there is not food in there.
On the pacifier not staying in their mouth. I actually bought a 6+ month MAM pacifier and it stayed so much better. I think maybe he could either control it with his tongue easier or it stuck between his gums better.
If you want check out his blogpage: www.ssmehyl.blogspot.com
Feel free to comment with any advice.
Thanks!

[heather]

You know, the whole pacifier thing really isn't that big of a deal. I was told by the nurses at the hospital, when I had Eyson, that he wouldn't be able to use one so I should figure out ways to sooth him without using one. They were so wrong. He absolutely loved his. He was born unilateral complete lip and bilateral complete palate. He has since turned one-year-old and he got rid of it on his own at 10 months of age. After his lip surgery he couldn't have it for about a week. Once the stitches and everything dissolved he had absolutely not problem with it. Honestly, they don't even want anything resting on their lip after the surgery. So I really wouldn't even worry about it. Let him use it if he wants because it's not going to be a big deal. Just make sure that he is off of it when he has his palate surgery. That's the only thing that Eyson's PS told me. He's not even concerned that Eyson still uses a bottle. Because when it comes down to it, after the surgery, they don't want anything in their mouth anyway. I hope I helped. Heather and the Kids