mamas out there with babies born with cleft palates?

[bananapancakes]

I know there are some of you out there, although I haven't seen any posts for a while. DS, who is now 10 months, was born with a cleft soft palate. We have struggled since the beginning to keep weight on him and fatten his little body up. At times we have questioned his development but for the most part he is on time with his milestones. He just had surgery to fix his cleft and things up looking up. I don't really know what I'm searching for by posting this, I think I am just looking for some support.

A cleft of the soft palate is not nearly as intense as a cleft hard palate and/or lip but it has brought on so many challenges in his little life so far. What are your experiences with your little ones who were born with clefts? Did you have any developmental issues? I am having a hard time deciphering what is delayed because of poor weight gain (he is 10 months and weighs around 16lbs) or if there is something more going on. He still doesn't use his pincher grasp, is this because we haven't really focused on bite sized food? He still has no teeth! Is this a natural response to the cleft? Any shared experiences would be helpful!

[2boyzmama]

Hi!

So glad the repair went well

I'm not sure I can help you, because my guy's palate issues stem from a chromosomal deletion, so he does have developmental delays and also slow growth/small stature. It is often prudent to see a geneticist when there's a cleft palate, as sometimes it is a symptom of an underlying syndrome. Did you guys see one? If you ruled out anything chromosomal, then I'd say keep a close eye on his development, get him into Early Intervention if necessary, and see how he does after he has a chance to recover.

Oh, and my kids didn't get teeth until 10 months either. My baby has no signs of teeth at 6 months, I assume he'll get them at 10 like his brothers did. So cleft or no cleft, I have late teethers!

[jgm06]

Hi ~ My dd was born with a cleft of the soft palate and micrognathia (small chin)...a complete surprise discovered about 12 hours after her birth. She's been slow to gain weight as well though has hit all of her milestones. She just had her 15month check-up and is 19.4 pounds. She had her palate repair at 8 months of age and so far so good in terms of how it looks. We held off on table foods until after her post operative visits when we got the go ahead from her surgeon. After that she eats whatever we are eating. She eats A TON! She just doesn't put on weight but I think a lot has to do with genetics. As long as your son is meeting milestones I wouldn't worry to much about his weight.
We had our DD in Early Intervention soon after her birth because we wanted to make sure she was developing appropriately and if there were delays, to help with them as soon as possible. She never had any delays but the EI support was wonderful. Once your son gets the go ahead for more solid foods you could practice the pincer grasp with cheerios or other small pieces of food. It does get easier. The first year was really hard for us in terms of adjusting to the feeding issues but it does get better!
Where are you in Maine? I grew up in Gorham/Portland and my mom is now in Augusta.
Congrats on you son and that he made it through surgery!
Hope this was somewhat helpful...
Jen ~ mom to DS-4 and DD-15 months

[Alice27]

My daughter was born with a cleft lip and palate. She is fine developmentally but she does have an oral and tactile aversion.

I think you need to trust your instinct. So many things go undetected even when a mother suspects that something is not quite right.

If it is just the weight gain that is worrying you, then he may just be destined to be small. As long as he has his own growth curve and is doing okay otherwise, then he is probably fine.

How are you doing? I crashed emotionally and physically after my daughter's palate repair. I think it was all that adrenaline that kept me going through the first 7 months.

Your right, there haven't been many posts about cleft lip and palate for a while. We should keep posting - I think that talking about it attracts new posters.

Alice

[AndVeeGeeMakes3]

VeeGee had a cleft palate. Hers has been repaired three times, and is looking great now. But, like 2boyz, there are other explanations for her tininess, so I don't have much to offer besides hugs!

[momtoalexsarah]

Ive been lurking alot lately, but my youngest was born with a grade 2(B) submucus cleft of the soft palate (meaning bifed uvula, full muscle involvement and hard palate notch - bilateraly U shaped and what bone of the hard palate is present is very high arched). The full severity of hers was not deterimined untill she was 2.5 years and repair done at 33months. She had eating and speech delays - but since the repair have come faster then we ever immagined. In the 15 months since her surgury she talks way more and has gained nearly 10lb (she is still smaller - 33lb at 4years). On non-complicated cleft palates most delays are gone by the time they are 3 if the repair is done at less then 12months. Seeing the progress that Megan has made after a very late repair - your child sounds like they are doing great!