My lil one was born almost a month ago and in the delivery room we found out he has a sofe/hard cleft palate (on top of his mouth in the back).
Therefore, he needs to drink his milk from a special bottle nipple a haberman bottle.
Has anyone gone through this with there child and the whole sugery procedure. We were told me the cranial facial team that it usually done 12-18 mths from now.
Re: Cleft palate (soft/hard)
thanks for replying. I really have not read in any boards of moms ging through this. / I am glad to hear your LO did amazingly well post surgery. The cranio facial team also mentioned a speech therapist just in case he might need it and also a orthodontist as well as the months go by I will meet the rest of the team. They also said they he is prone to get an ear infection that my pedi will be checking prediocally. Which if this occurs they will add the drainage tubes in his ears which I hear is no biggie. /
We are using the haberman nipple from medela. How old is your son now? Does he have trouble eatting solids and drinking from a sippy cup?
They told me he should not have trouble eatting but it can be hard for him to use a sippy cup. My LO has the soft cleft palate all the way in the back and a bit of the hard.
again thanks for responding to my post.
Hi! I randomly search this board to see if other mom's are going through what I went through with my DD. We too found out that she had a cleft palate in the delivery room. We used the Haberman bottles as well, and they worked great! We never moved to regular bottles, but it wasn't that big of a deal in the big scheme of things. She was also born with PRS (Pierre Robin Sequence) which was basically her tongue would fall back into her airway and would cause her to choke. This is often found with cleft babies. So at a week old she had her tongue sewn down, this of course made feeding harder, but she did amazingly well with the Haberman and was always on target with weight. She had her palate repair at 11 months and then her tongue undone at 14 months. We had her weaned off the bottle at 12 months and she never had an issue with sippy cups. She also did great with eating foods; I think sometimes they give you the worst case scenario, just in case. Again, this is just our experience. She had a soft cleft palate and it didn't affect any bone. She is in Speech Therapy now, she started at about 22 months, but I honestly believe it's because her tongue was down for so long, the muscles just are strong enough for some letters. She talks non-stop; it's just understanding her... If you have any questions at all, please don't hesitate to message me! I've been there, and I promise you'll get through this; this is much tougher on you than it is for them. Also, a tip, ask your pediatrician if they can get you some extra nipples, they are expensive and usually they can get them free for you through the hospital or something. I never had to buy any and I had about 8. You will go through different sizes as well, so if they start to get fussy, it may be because they need the bigger nipple. Take care, and again, good luck!
Hi! My son Edmund is now 5 1/2 months old and he was born with a complete unilateral cleft lip and bilateral cleft palate. We just got done with the lip repair which wasn't too bad. Our surgeon is starting to prepare us for the palate repair which will happen around his 1st birthday. We didn't have any luck with the haberman bottle and have been using the mead johnson cleft feeder.
The entire process of dealing with lots of doctors appointments and the idea that your child is going to need surgery is very stressful. The lip repair was only 3 hours and it felt like an eternity. We are all here if you need questions answered.
My son will be 6 years old in February (and just a normal boy ; ). Before the palate repair he had a tough time with stage 3 foods, but about 3-4 weeks post palate repair/recovery he moved onto stage 3 & table food really easily. Also no problems post repair to learn to use a sippy cup. Unfortunately Munchkin no longer makes the ones he used (they were awesome), but it might take a little while to learn how to suck (remove valves or find one that you can squeeze).
I highly recommend meeting with Early Intervention for speech! My son started since birth, & started focusing on speech at 1 yrs old. It is never to early. He is possibly going to be phased out of speech this fall, he no longer has any articulation problems!
Let me know if you have any other questions, there are so many resources available now that were not around 6 yrs ago!