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This one is about: Pre-Surgical Bonnet
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Okay, we are on the road to surgery for Aaron (uni. Cl/p) at the end of this month. His PS (Plastic Surgeon) sent us to an orthodontist to fit him for the "bonnet" which I thought would be a high-tech retainer like thing for a baby's face. The ortho. stapled an elastic band on a hat I brought in, stapled some velcro on the band, and sent us on our way, admonishing us to have him wear it as much as possible.
I want to NEVER put it on him - it is a hateful, scratchy, barbaric looking thing that no doubt itches and is uncomfortable. What should I do? Need advice from those who have used a bonnet or those who know about them. Will this really help? Aaron's right side (unaffected) protrudes under his nose - the PS says the bonnet will help pull the right side back a little so when the repair is done on the lip, there won't be so much stress on the tissue.
Response from Joanne:
Use the bonnet that the orthodontist did as a model and make one you like. Make sure it does the same thing, and when you finish it, take it to the orthodontist and ask him if it's ok too. You can use softer elastic, brighter colors, more baby-friendly velcro and stitching instead of staples. I've heard people say that the bonnet was fabulous - others who said it didn't do a darned thing and they couldn't get the baby to keep it on. It's only a month, so cute may not be a necessity, but I'd darned sure get those staples away from my baby's face. (eewwww - they sound very dangerous to me!!)
Response from Joyce:
Laura, I'm afraid I can't help you very much. We tried the same thing with Riley without much luck. When we went to a different PS he installed the Latham pin device. I didn't like that because it meant general anesthesia and an overnight hospital stay. (I know Branden's was done much quicker and he went home the same day). I was wrong, not for the first time! It worked beautifully and she didn't seem to mind it at all. She had her lip surgery about 2 months after and they took the device out at this time. I'm just going to get out an envelope to send two pictures of Riley to David for the gallery. I can't wait to have everyone see her. Give Aaron a hug and keep us informed. Love, Joyce
Response from Tracey:
HI there, boy do I know what you're talking about!!!!! I felt the same way when Caeden had to wear his, he hated it! We did keep it on him however, and it did pull his premaxilla down before the lip repair. Caeden had a bilateral cl&p though and his lip protruded quite a bit. The sad thing was the PS told me that in the operating room when they took it off the premaxilla popped back up! I'd rather not have known that, I had to hold Caeden all the time during the "bonnet time", he got pretty fussy, not that I blame him! I don't know what to tell you though I'm one that always does exactly what the doctors tell me. I'm learning as time goes on though to get a few opinions before we do anything, medically speaking.
Response from Gail:
There happened to be a couple at the symposium with a baby wearing a bonnet. The doctor took me over and introduced us and we took a real good look at how it was made. Instead of the doctor making it the mother had a seamstress make the bonnet for her daughter. They bought a very cute, sturdy, little hat from Gymboree and sewed on a soft strap (nude color) to go across the face and lip - one side with velcro to make it easy to put on and off and adjust the tension. Where the strap came across the lip the had put an extra piece of soft flannel-like material so it would be non-irritating.
About a week later, Laura is still having a hard time with the Bonnet...
Okay! I am officially fed up with my son Aaron's "bonnet". The elastic won't stay in the right place, it ends up in his mouth, and it makes him crazy. Am I wrong to not force it on him? I feel as if I am trading a lifetime of a better looking repair for a few peaceful moments now. I have completely refurbished it with soft flannel and stitches instead of staples, but it still is a rotten torture device for a very active, opinionated kid! Please, tell me there are those of you out there with a uni. Left cl/p repair who didn't do the bonnet!! His isn't particularly wide, but it is complete.
Another response from Joanne:
You're right -- none of mine wore the bonnet. None had the Latham devise. They were just their natural little selves and they look GREAT. The bonnet does not make any difference in the outcome -- just in the ease with which the surgeon can effect the repair. With the premaxilla brought in, there is less tension on the healing suture line. Less space for the surgeon to cover. But the end result is indistinguishable. To be honest, the bonnet is most often used for bilateral clefts. Very few kids with unilaterals are expected to use them. I am surprised that it was ordered for Aaron. I can't tell you not to use it. I can only tell you that thousands upon thousands of babies born with a unilateral cleft do not use the bonnet.
Look through the gallery -- look at how many of the kids with unilaterals are not using presurgical bonnets. There are even a very LARGE number of kids with bilaterals who never got the bonnet. It's a decision made between you surgeon, your orthodontist and you (and evidently, from the looks of things -- Aaron too!!!) My vote -- call the surgeon and discuss it with him. Let him know that it is not likely to ever fit any better than it is fitting now, and that the protrusion, as far as you can tell, is not helped by the bonnet. Be aware, though, that the next step from the bonnet is likely the tape, and the tape can cause an irritation on his face. However, like I said, most kids with unilaterals don't use the bonnet and they don't use the tape. None of my three (two with bilaterals) used anything at all -- they all have very nice repairs.
Response from Krystal:
Hang in there with that bonnet thing. We went through that also with our daughter Ellise (she is 18 months old now). We thought we would go insane trying to keep that thing in place. After a couple of months we noticed that her premaxilla (?) was almost centered! She had a severe bilateral cleft lip and palate and her premaxilla was off to one side and protruded. Now she looks great! I know what it is like and you think you will never be relaxed again and enjoy your baby but that day comes and life will return to normal again.
Response from Debra:
Boy, do I know how you feel! Chris wore the band aid/surgical tape/rubber band torture device and after 1 month of watching my little one's face peel and bleed I was in tears most of the time! There were times when I put it on him that I was positive that I would scar him emotionally for the rest of his life!!! I can't really advise you on what to do. I got real lax in the end because I was so upset and I really feel that Chris repair would have looked better if I hadn't. I'll never know if he could have avoided the rhinoplasty if I'd just hung with it! However, Chris' cleft was wide. I would talk to my PS about it and see what s/he says.
P.S. For all of you who use the lip traction I found that Rite Aid sheer band aids did not affect Chris' skin at all. The adhesive was just enough to keep the device in place and not so much that it ripped or irritated his skin. I also found that a one hour "breather" every day with some baby oil on his face helped a great deal. Finally, Johnson and Johnson makes a cream called "Purpose" that worked wonders with his face when it was red.
Response from Vickie:
Doug did not have the option of a cloth bonnet, we only had the tape thing that Debra described, but for the same reasons as the bonnet from what I understand. We had to fool around with the redness and irritation of the tape, as an aside, we found that Curad makes a sensitive type bandage that worked well for us. We did not notice a difference right off either, it took a while, but then we did finally see that there was a difference, but then I don't notice Doug's growth until I stand him up against the wall and actually measure him. The results are quite beautiful.
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