cleft palate and lip

[jfrydendall]

At our clinic we just had a baby born with cleft palate and lip are there any resources that would be good for me to have because we will be caring for this family in conjunction with the pediatrician. We are in a very rural area and most of the providers and nurses have never seen this, so any suggestions would be appreciated.

Jodi

[nursedani08]

I realize it has been over a month since this was posted, how is it going?

I have a daughter that was born in august with a cleft lip and palate. We live in upper michigan so we travel to U of M in Ann Arbor for her care.I have found a lot of helpful information on this website: http://www.cleftline.org/ there is also information you can print off on them. There is all kinds of info and personal stories on that site, there is good information on feeding options (which can be a struggle with cleft palate.) If the baby has any trouble with feeding I would recommend th mead johson cleft nurser https://www.enfamil.com/app/iwp/consumer/productCategory.do?id=/Consumer_Home2/Enf_Shop/Enf_All_Products&currentSubCatPath=/B2C/Accessories This bottle has been a lifesaver for us, cut our daughters feeding time down from 1hr to 10min. I would recommend the Nuk nipples or an orthodontic nipple to go with it.

Most of the parents I know who have a kid with a cleft, travel to a major medical facility for the surgeries and often other aspects of care as well because they have cleft teams which usually consist of pediatric plastic surgery, otolaryngology, social work, psychology, speech pathology. watch the ears closely as fluid can build up with cleft palate babies and they are very prone to ear infections. Usually an ENT will put tubes in at the time of the first surgery. I'm glad we did, my daughter never acted sick but when she had her lip surgery in january, the ENT said she had fluid in both ears and puss in the right ear. The built up fluid could lead to hearing loss so it's important she is followed closely by an ENT.

I am part of a group of parents of kids with clefts on http://community.babycenter.com/groups/a56125/cleft_lipcleft_palate It has really been helpful for me to be able to get advice from other parents and it really helped us through our daughters first surgery.