Submucus cleft palate?
Anyone have any experience with their child or someone they know with a submucus plate? My daughter's speech therapist wants her to get checked for it because she is very nasal when she talks. She does have DiGeorge Syndrome (22q) and one of the many things that could come with that are cleft palate issues.
She had heart surgery at 6 days old and was having a hard time sucking on a bottle and breathing at the same time, so she was put on a feeding tube. She never did learn to take a bottle and her speech therapist said the submucus palate may have had something to do with that.
We are going to see and ENT tomorrow so my questions will be answered sooner than later, but just wanted to hear personal stories that aren't filled with medical terms.
Re: Submucus cleft palate?
I do not have experience with this specifically. But I do have experience with a child with a Cleft lip & palate. Which are in the same family. Here is a good resource to get you started & from what you stated (nasality & feeding issues) it does sound similar - https://www.cleftline.org/publications/submucous
We thought our son with 22q deletion had the submucus cleft palate due to his coughing, choking when eating. We did a bronchoscopy in October to look at his airways, but they also checked for the submucus cleft palate. They didn't think he had it, but he also was never able to take much from the bottle. He is still having a hard time taking anything by mouth.
I also know of another kiddo in our area with 22q deletion and he does have the submucus cleft palate. He was able to take from a bottle after his heart surgery and is eating just fine to this day. I don't think the clefting has caused many problems for him. I guess it just all depends.
My DS has a submucosal cleft palate.He's had a couple other surgeries that were more pressing and since he is only 8 months we haven't really done anything about it yet.
He has fluid in his ears (but that could also be because he has Treacher Collins Syndrome) and he's going to get tubes in his ears next month. Poor kid pukes out his nose every time.
Anyway, his craniofacial team and ENT said that we should wait and see if it causes problems with speech or eating solid foods before we talk about surgery. We go see them every 6 months to check up.
How did your ENT appointment go since you posted this a while ago?
Hi all, I'm kinda new to all this. I am pregant with my 2nd baby but found out yesterday that my 2 1/2 year old has submucous cleft palate. Her pediatrician saw that her uvula is perforated and we discussed her constant ear infections, sometimes trouble swallowing, and horrible gag reflex. The SCP explains all these things but it troubles me that a doctor did not find this sooner. She had trouble breastfeeding as an infant (I ended up bottle feeding which she did fine with) and they suspected that she was tongue-tied but never said she actually was. We are going to see her ENT next week to discuss options (she may need tubes in her ears again too). The pediatrician does not think she needs surgery immediately since it has not effected her speech or kept her from eating enough to grow and thrive but it will eventually need to be corrected because it will continue to cause problems for her (i.e. ear infections).
I am just looking for someone to talk to or other mommies that have experience with this. I am also concerned about my unborn son because from what I found out, cleft palate is more common in boys and is also more common in Asians (my husband is Filipino). If he does have the same thing, I would like to get it corrected ASAP so he (and us) doesn't have to go through what we have been through with my daughter. Thank you in advance for any help!