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Cleft PalateMost PRS babies have a cleft palate, that is caused by the tongue not properly descending during development. PRS babies have a horseshoe shaped wide cleft, typically involving both the soft and hard palates. Most teams recommend that the palate repair be completed before speech develops, and also to have speech evaluated at preschool age. Sometimes an artificial device is used prior to surgery to aid in narrowing of the cleft before surgery.
The palate is repaired surgically at anywhere from 9 months to 18 months. It could happen either earlier or later than that. This factor is really dependent on the size of the baby and what other conditions are present. One key factor in repairing the cleft of a PRS baby is their weight. Intubation is sometimes difficult because of a small airway, which is another reason to wait until the child gains sufficient weight. Your child's plastic surgeon will make this decision based on their findings.
Another key factor is the growth of the lower jaw prior to palate repair. The child needs to have room for the tongue to lay down after the palate is repaired since there is no longer an opening there. PRS babies can have a difficult time with anesthesia as well, so the surgical team will take precautions during surgery. We are finding more and more plastic surgeons on performing mandibular distraction on PRS children to "help" the jaw growth along. Sometimes this is necessary to avoid a trach, get a trach out sooner than expected or to ensure there is enough growth to complete the palate surgery.
Typical hospital stays for cleft palate repair would be one to three days, dependent on the child and the surgeon. Most surgeons want the child weaned from the bottle prior to surgery. Some surgeons want the baby to be weaned from the pacifier as well. Make sure you discuss all these issues with your team. It is very important to know what their post surgery guidelines are before surgery, so you won't have any surprises.
It is a good idea to begin to familiarize the child with a cup prior to surgery. Your surgeon may require your child to wear arm restraints after surgery to avoid them putting their fingers or other objects in their mouth. Check our equipment web site which illustrates some of the restraints available. Talk to your surgeon or their nurse to find out what type of restraints they have available.
Some tips from experienced parents on cleft palate repairs:
Check with the hospital on their rules for you staying with your child.
Pack a favorite toy or blanket, so your child will have something familiar to them.
Make sure you wear older clothes while you are there. There will be some bleeding and like most parents, you will want to do lots of cuddling.
Check with the hospital on their policy for diapers, formula and other special needs items your child might have. You donít want to pack too much, but you need to pack enough.
If your child is used to a certain type of sippy cup prior to surgery, bring it with you in case the bottle is not going to be offered to the child after surgery.
Cleft ResourcesCleft Palate Foundation considers their primary purpose "to enhance the quality of life for individuals with congenital facial deformities and their families through education, research support, and facilitation of family-centered care."
Pierre Robin Network
Quincy, IL 62305
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