Cleft Secondary Only Palate moms?

sommerrayne

I gave birth to our beautiful daughter on Thursday and about 40 mins post birth, noticed a classic secondary palate cleft (NOT affecting her lips, gums or teeth). We are now exclusive pumping and bottle feeding with the Haberman Feeder without having to help her at all. She pulls the milk into the feeder from the glass bottle and into her mouth on the medium setting (middle line).

I'm wondering if there's anyone else out there. If anyone can point me to an area of support, info, etc. I'm so new to this I'm not even sure what to ask but wondering the typical age for repair (Children's told us between 9-15 months which seems like a HUGE gap in time to me developmentally, size wise, etc). Wondering the long term speech affects. Wondering your experience with hearing loss/ear infection rates. Wondering if there's any other issues that this poses that might not be obvious (like other than feeding, ear infections, etc).

Any information would be greatly appreciated!!!!!

Erin0922

Bug had a classic cleft as well (although part of a bigger syndrome but that doesn't affect your question).

He fed on Haberman after 4mo, before that he had a feeding tube. He could never do purees because they came out his nose (uh, gross - but he never seemed to mind, lol) but around 6 mo he started getting some table food. He knew to move to gums and mash, and never had an issue choking or anything. His was repaired just after Xmas, when he was 9.5mo old, at Johns Hopkins. They tell you 9-15mo because the child needs to be a certain size - and children grow at different rates. So thats not unusual. He had a TON of fluid build up - to the point he was in danger of permanent damage to his hearing. So he also got tubes during the palate repair. Because of that, I'd make sure you never feed in a fully reclined position.

His surgery was a great success - they did have to use a pinky-nail size amt of cadaver tissue to fully close, but it took right away, and looks awesome. And post-op he was only in pain for 2-3 days. He will have to see a speech therapist once he starts talking to make sure he's on track...

if you have any questions PM me (he just woke up so I gotta run!)

Ciaram22

My son is going to have a complete bilateral cleft of both lip and palate. We went to Children's on Friday to discuss the surgery and while his lip will be done between 3 and 6 months we were also told that the palate wouldn't be touched until at least 9 months. It all depends on her size.

I guess there is some belief that there is a generation of kids out there that have more issues because in the late 80's early 90's they were doing the surgeries too soon. So now they believe there is a generation of children that have more hearing and speech problems because they were doing the surgeries too soon.

rsd12

sommerrayne:

I gave birth to our beautiful daughter on Thursday and about 40 mins post birth, noticed a classic secondary palate cleft (NOT affecting her lips, gums or teeth). We are now exclusive pumping and bottle feeding with the Haberman Feeder without having to help her at all. She pulls the milk into the feeder from the glass bottle and into her mouth on the medium setting (middle line).

I'm wondering if there's anyone else out there. If anyone can point me to an area of support, info, etc. I'm so new to this I'm not even sure what to ask but wondering the typical age for repair (Children's told us between 9-15 months which seems like a HUGE gap in time to me developmentally, size wise, etc). Wondering the long term speech affects. Wondering your experience with hearing loss/ear infection rates. Wondering if there's any other issues that this poses that might not be obvious (like other than feeding, ear infections, etc).

Any information would be greatly appreciated!!!!!

First of all congratulations!  I think the biggest issues could be feeding, speech, & ear infections or hearing issues.

My son was born with a wide unilateral complete cleft lip & palate.  While it is a little different, the palate recovery could be similar.  His surgery was done at 11 months of age & he only needed 1 surgery for his palate.  The palate needs to be big enough as well to do the repair.  We had a very easy post surgery recovery.  We were advised by our surgeon to keep everything away from his mouth for 3 weeks.  I was not worried about speech so much before the surgery (he was my 1st), but we have been with a speech pathologist since he was 1 yrs old.  He has definitely struggled with articulation (which is a common issue & could be age appropriate too).

We have struggled with hearing issues... he did have tubes put in at 3 months because of fluid in the ear canal.. but they fell out when he was 2 1/2 & had severe hearing loss in 1 year (which also could have impacted his speech).  We used a nasal spray from when he was 3 1/2 until his last surgery/revision this fall.  Where his ears were finally clear!  His speech has vastly improved over the last year. Last school year he was understood 15% & this school year is 99% understood.

A couple of my favorite sites for Clefts (of all kinds) support >

Cleft Lip and Palate Foundation Of Smiles on Facebook (for some reason I cannot grab the link, it is private - but they have a public one too)

&

https://community.babycenter.com/groups/a56125/cleft_lipcleft_palate on baby center

 

Good luck!

annibes

Preface: I am still in school and not yet licensed as an SLP. I also have not met/seen your child so I not all of what I say may be applicable to you, but here's what I know (I trained at a craniofacial clinic, for speech pathology): Lip is generally repaired earlier, palate later. 9-15 months is a big range because craniofacial teams more concerned with speech tend to want to repair earlier (even earlier than 9 months in some cases), while teams more concerned with structure/orthodontia want to repair later. If the cleft is isolated (no genetic syndrome) and there are no coincidental language disorders, language development should be on a typical track. Mamas often love to hear the following: your LO will probably say mama before dada!

annibes

Oh, and at our clinic, we saw a lot of kids with tubes. Ear infections can be a frequent problem. Older kids sometimes had issues with hypernasal speech. Secondary surgeries were sometimes necessary if the structures werent working properly, and speech therapy was sometimes needed if the child was making speech errors to compensate for structural problems. Make sure you're followed up by the team- I think a lot of teams see their kiddos once a year, which is great for making sure everything is working out ok!