eating

[Michael's mom]

congratulations on your little girl, Makayla. I love that name. My son's name is Michael, so you can guess why I like it. Re: the cleft palate, I'm not sure, as that is not our issue, but I just watched a special on a surgery on the Discovery Health Channel, and I can now see why eating , rather, sucking is such an issue for babies with a cleft palate. That complicates the answer. Eating and trachs aren't always an issue. My son has been a great eater and has a trach, as there are no reflux issues or problems with the epiglottis. The kids that have those issues are the ones that really need the g-tube. I would FORCE them to prove to me that she has one of those issues before going with a tube because once you tube feed, it's hard to go back. Kids with tubes don't like texture or anything later - won't even eat pudding - imagine that!! Here are some suggestions: see a pediatric specialist in the esophagal field - don't know the name of the specialist, but your pediatrician/pulmonologist/ENT will. A pulmonologist or ENT can do a bronchoscopy to tell you if she's having trouble with the epiglottis. Immediately call your county and get the Early Intervention Group out at your house to assess her needs and FORCE them to give you speech therapy. A speech therapist will show you exercises to help her to suck better. Next, go on to the community bulliten boards at ivillage.com and go to the feeding issues or G-tube group. Pick their brains and you'll get some good direction. Take care and good luck! Sue

[Gretchen(Celia's mom)]

I totally agree with Sue about the steps to take,but I did do all those things for 4 years now and my daughter still will not,does not, or cannot eat by mouth. She has Dandy-Walker syndrome ,cleft palate among lots of other things. After she had her trach put in at about4 months old she never went back to eating. Whether it was the trach surgery, intubations, the trach itself I have no idea, but we have never stopped working with a speech therapist. It's a long hard road but well worth it even if things don't go the way you wish they would!!!!! Good luck!!! If you have anyother ?'s I'm here. Also there is a cleft palate message board at iVillage that might be some help. Gretchen http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/biggrin.gif

[Lily's Mom]

Hi,
My daughter Lily is 11 months old and was also born with a cleft palate and Pierre-Robin. She had a g-tube put in when they did her trach surgery at 4 weeks. It has been my mission in life to get her to eat by mouth ever since then, and it is a daily battle. I don't know where the feeding issues come from, whether it's because of her trach, the feeding tube, her underlying problems (she also has a chromosome disorder), or what. Things did improve quite a bit once she got her cleft palate repaired (6 mo).

She is making progress, is drinking about half of her formula with a bottle, and is eating some solids. I've never been 100% sure that getting the g-tube was the right thing to do, but at least it gives you a guaranteed way to give her nutrition so she can grow and develop.

Have you tried out any of the cleft palate bottles? I think I tried them all! The pigeon nipple worked the best for us.

Please email me if I can help out in any way.

Good luck!
Erica (Lily's Mom) http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/smile.gif

[Olga]

While I cannot comment on the cleft palate issue, I did find that having a trachy made absolutely no difference to my daughter's swallow reflex. This will confuse you even more after reading all the other replies. Grace was trached at two months due to subglottic haemangioma. This hasn't affected her development at all. She is on solids now and eats a normal diet. BUT she is a picky eater and has a small appetite. I won't know until after she is decannulated whether this is due to the trachy or the fact that she is fussy. I would agree with Michael's mum and try and establish that your child needs tube feeding before you go ahead. Good luck Olga