Soft Cleft Palate

Natasha - posted on 11/10/2011

All your comments and stories have helped me feel a bit better..My 3 week old daughter Krystal was diagnosed with a soft cleft palate at 2 days old..I have gone through all the emotions sad angry you name it I have done it.....Shes putting weight on which is great the only thing that bothers me is the milk coming out the nose SCARY..Her surgery is booked for 25th july next year wish us luck!!

Lorea - posted on 11/10/2009

i could not find a cup with out a spout. so i thought if i could just use a smaller spout with a soft spout,this might work.i found that Heinz baby basics green and yellow cup was great and parent's choice pink one was good too they can chew on it toget the milk out,i took out the plugs and this made it free flow which is messy but only temperary.these smaller cups or sputs don't go to far into their mouth,so it was the best and only ones'i found,other than using a open cups.i should also say,that i couldnot just let her have it on her own as the mess so i just would offer it to her more frequently,during the day, at meal times in the high chair was different ,make all the mess you want.:)

Reagan - posted on 11/07/2009

Is it hard to find things to occupy the time with we are getting through the first two weeks after surgery? Any suggestions? My little girl is having a hard time without the sippy lid and the clock is ticking to surgery in January. I need to find a sippy cup that does not have a spout. Your stories are so encouraging and helpful. It blesses me and makes me think...."okay we can do this." I am aware that it will be hard but I know it will also pass.

Lorea - posted on 10/23/2009

my daughter only had a softpalate, so only the one surgery so she didnot need the opterator,this is for the hard palate? right? the soft tissue will bleed a little until it is healed,the food is suppose to wash the blood and scabs away.does the opterator fit him properly,maybe as he is growing it is changing,this is a guess,can they resize this.I would call again and keep bugging them ask for a feeding specialist,if you are close to the ot can you take him in to have them watch you feed him,or can they come to your home to watch. I did that, called them and they came out to watch. sorry cant help to much good luck,

Karamel - posted on 10/22/2009

I have a 7 month old Elias Desmond...we have gone through the first surgery. It went great. Now, he's older and won't keep the opterator in for feeding. He wants the food, it just hurts and bleeds whenthe food hits the soft tissue. What did you do for this. I called the OT specialist...lean him back puree until runny. it doesn't work.

Lorea - posted on 10/21/2009

i bought a few to try, one is heinz baby basics green one and pink one i think it was for 6months?. both have different openings i take out the plugs and have her free flow she does pretty good it is messy.born free is another one it looks like a longer pointed nipple but it is very easy to chew on it to get the fluid out.it did not bother her mouth at all. i also use an open cup for her at home. she seems to do better with this.

she is doing great now,more sounds some are clearer that others.

emotionally it is tough quite a few times ijust wanted to cry, she was so brave, hang in there, and be there for them they do need lots of cuddles.it does end,you wake up and she is running around thehouse as if nothing happened, they are our little troopers.good luck

Reagan - posted on 10/01/2009

Wow, looks like it has been a journey! I am very glad for the heads up. What kind of sippy cup do you use? Our team said nothing with a spout but I can't find those. How is your little one doing? Was it really bad? I am prepareing myself for the worst. They moved Rylee's surgery up to January or feburary. I am thinking the sooner the better. I am taking 3 weeks off. Is that long enough? I think that we all are brave. Thanks for the post it is encouraging and informative. Keep us posted about how your little one is doing.

Lorea - posted on 09/30/2009

so better late than never to let you all know how it went, we had the surgery.it was about 2 hours, she was in icu overnight then sent to the ward the next afternoon,they just kept her there to observe her,mainly her heart she has a vds too but that too is closing on it's own.she had no problems at all with it. i was lucky to see her right after surgery in the recovery room.it was not pretty, she had a tongue stitch,which is a piece of thick black thread put through her tongue so they can move her tongue, it was taped to her cheek and a little bloody.she was swollen, (her cheeks) the nurse told me about it(the stitch),usually they remove it before the parent sees but they were ok for me to see. i'm not sure i was but sucked it up for my little one.she was on tylenol every 4 hours with no food or fluid for 24 hours which she did pretty good she slept mostly.they did not put her into the straight armed jacket that i was told she might have to wear, she really did not touch her mouth let alone put her fingers in it. i asked why not they said (the Doctor) had studies have shown if a child wants to put something in their mouth they will find away, sometimes the coat/jacket can cause more damage. so she did very well surgery was on monday and we were sent home on wed am. we definately kept up on the tylenol for her pain and slowly weened her from 4 hours to 6 to 8 of course she also cut two teeth that same week. we weren't sure if tylenol was for mouth pain or tooth pain, either way it worked. we started on fluids right away and she did great,slowly introducing purreed foods,doctor said this will help move the scabs and blood moving (yuck)

it has been almost a month since surgery,some of her stitches have dissolved, and the skin seems to have stayed closed. i must let you know that your child may have very bad breath ours did everyone who held her thought she had pooped lol,but it was her breath from the healing tissue so be prepared for that, it has gotten better.it was a challenge to keep toys and things out of her mouth,i did put all sharp pointed toys away for the first three weeks,this seemed to go better as not to entice her.like the malets for her xylephone and her plastic animals, normally i would not care if she chewed or sucked on them but did not want her to open the stitches. we are going to see our plastic surgeon in the first week of october to see if things went well. we did have one misshap we were feeding our baby when suddenly she threw up and blood came out her nose and mouth.we thought she had blown a stitch but as i looked i couldnot see any thing so we took her in to emergency,of course we are visiting grandma and we are not near our usual hospital, they looked and could not help us they called the children's hospital and the plastic surgeon there led them through what had happened, so apparetnly a blood blister kind of formed behind the stiches near her nasel cavity and when she threw up it ruptured. there was no more bleeding. they sent us home.she was fine as if nothing happened.so far so good she is eating harder foods eg crackers and drinking fluids buy cup or sippy cup.i know everyone's child's surgery will be different, but here is ours hope it prepares you a little.good luck to you all.

Lorea - posted on 08/14/2009

just wanted to say that we have been booked for surgery august 31, that's 2 weeks. they say she is ready. even if she is only 13lbs 8oz. she is 14 months now and we have been pretty successful with feeding her orally. she gags a little but no longer chokes. so we shall see how she does after her surgery. yes i pumped and gave her my milk for 8 1/2 months,i too was running out and notkeeping up with the milk production that she needed. i was lucky my sister also had a baby in the folowing sept 4 months later so she saved her milk,that her little one did not need and we used that for my daughter too.lucky. yes i am worried about this surgery too. but we are in bc children's hospital in Vancouver, BC Canada and they have some really great doctors and a wonderful cleft palate clinic here. so wish us luck and pray for us. i'll try to update as soon as we can after surgery.:)

Reagan - posted on 04/08/2009

Wow, you guys are getting surgery done way earlier than my kiddo. I guess different palate teams have differing opinions on when to operate. I hope that all has gone well for your little one. They say it's harder on Mom and Dad than the little one.

Reagan - posted on 04/08/2009

Wow. It sounds like we have similar experiences. My little one lost SO much weight at the hospital becuase the nurses did not know that she could not sucessfully breastfeed. I have pumped for the last 7 months but am done with that now due to lack of milk supply. My daughters surgery is not until 18 months at Cardinal Glennon in St. Louis. She is such a blessing. In all way other than feeding a normal, healthy, happy child. We love her so much and are so blessed. Thanks for sharing your story it is so helpful to talk with other who understand.

Lorea - posted on 02/17/2009

my daughter had her ear tubes put in in dec,lucky she had another surgery to do so they decided not to wait and did them then and what a difference. she can hear us and startles now and is definately making more sounds and repeating me lots. I glad we did not have to wait til july/aug. she too is only suppost to have one operation.

Tara - posted on 02/16/2009

My youngest daughter. We didn't know until after she was born either. She wasn't taking her bottle well for the first day and luckily she had a great pediatric nurse at the hospital who had her checked immediately after watching her eat. The first two months were really hard- choking spells in the middle of the night, weight checks- I hardly slept because I was so worried about her. The look in her eyes when she was choking brought me to tears several times. Shes now 7 months and doing really well. No choking in several months and shes such a good baby- full of smiles. Solid foods give her a little bit of a problem sometimes when she tries to eat too fast- gets stuck in her cleft, but shes fine after a drink of water. Her surgery is in July- the surgeon said she should just need one but she will also have to get tubes put in her ears at the same time because of fluid on her eardrums.

Lorea - posted on 02/04/2009

sorry got cut off at the end of the comment I wanted to say that the nasal and choking problems she does have it's a little unnerving but she seems to handle it better that we do sometimes. she used to foam at the mouth all the time but now it seems to come out her nose more now she has been teething and I noticed this has caused her way more saliva drolling out the mouth and nose too,of course but also has caused coughing and gaging on the extra saliva seems to get phlemy. she holds it in her mouth weird .then she threws up, not pretty.hopefully this is not forever but other that that she is a beautiful girl and a joy, oh yeah we just saw the plastic surgion yest and he is reschedualling her surgery for july instead of march with a follow up 3 months from now just to make sure her size is good and that she is healthy and such things she is still too small to do the surgery safely on her he said .she needs to be a little bigger.so keep your finger's crossed for us they could still bump us again.Oh she also said he first word the other day..... mama clear as a bell.

Lorea - posted on 01/27/2009

hi my daughter is 7 1/2 months old and has a cleft palate, soft and a tiny bit into the hard palate. We did not know for a week after she was born. she was a premmie born at 34 weeks but weighing, 2 lbs 12 ounce she was small and the nurses and doctors missed it. they found out when she cried really loud a nurse thought hey what's that. and sure enough after the doctor checked there it was, so breast feeding was suddenly ruled out which totally threw me for a loop, she was getting some from me just not enough. they just can't make the suction enough to pull out enough milk this is what i was told. it's like sucking threw a straw with a hole in it, you get some but not much, and because she was so small they did not want her to waste her energy on feeding just on gaining weight. to go to but a fighter all the way.

Reagan - posted on 11/14/2008

I have a 2 month old daughter with a cleft palate. She will have surgery at 18 months. She is only supposed to have one repair. She is s JOY! We didn't know about it til birth either. Was it hard at first with nasal regurgitation? What about choking? Did you know he would have to have 3 repairs? I think it is great to have people to talk to about it.