One of the biggest questions I get as a practitioner is: When can I expect to have my next surgery?

And an even more frequent question I get is: When will this all be over, so I can feel normal?

These questions are completely expected and customary because I remember that anxious feeling I would get as a patient when I would attend the Monday night, once-a-month craniofacial team appointment at WNY Children’s Hospital with my parents. I always wanted to know when the next surgery was so I could prepare for it, but I also remember having clammy hands just thinking about having to go through the general anesthesia and whatever recovery might mean for this particular surgery.

If you are a cleft patient, my guide will help you prepare for your next steps so you can know what to expect and when. Also, it should help steer you in the right direction for when you are unsure of what type of doctor you should be seeing.

If you are a parent of a cleft patient, and you were anything like my parents, I know you will find my guide helpful because this is completely new for you. My parents always wanted to be strong for me, and I know it would have helped even more if they knew what to expect over the course of their child’s treatment for when things would occur.

Below is a simplified outline for when you can expect to have certain procedures and also when I recommend you should be seeing certain doctors. These times are approximate and will vary for each individual, so please keep that in mind. Also, I will do blog posts on each aspect of treatment, so the following guideline is simplified and meant to be used as a quick cheat sheet for reference. This timeline is also assuming that each surgery has been successful.

Cleft Lip & Palate Treatment Timeline:

1st week of life: NAM (Nasoalveolar molding) Appliance

An orthodontic device that helps to shape and improve the position of the nose. Adjusted every week by pediatric dentist.

~3 months: Cleft Lip Repair

The Rule of 10s: Surgery is performed when the patient at least 10 weeks old, 10 pounds, and has a hemoglobin count of at least 10 grams

~4 months: Obturator Fabrication

A maxillofacial prosthodontist makes this. It restores the separation between the nose and mouth.

~10 months: Cleft Palate Repair AND Tubes in Ears

I recommend having these done at the same time to avoid 2 surgeries. The cleft palate repair is done by an oral surgeon, and the tubes are placed by an ear, nose, & throat doctor.

~18 months: Speech Evaluation

Speech therapists will evaluate speech & child will be in speech therapy until about 5 years old.

~3 years old: Craniofacial Clinic visits

The patient will start meeting with the craniofacial team annually.

~4 years old: Secondary Speech Evaluation

A speech pathologist will evaluate if a surgery is needed for the palate to improve speech or if speech therapy should be continued.

~5 years old: Lip/Nose Revision

The plastic surgeon will revise the lip and/or nose if it is necessary.

~8 years old: Rapid Palatal Expansion

An orthodontist will begin treatment at this point. Usually, an RPE is done first to expand the palate that is constricted due to scar tissue.

~10 years old: Alveolar Bone Graft

An oral surgeon will use bone from the hip to build up the defect at the gumline.

~11-18 years old: Braces

The orthodontist will continue treatment & can place false teeth on the braces to fill in the missing teeth.

~18 years old: Orthognathic Surgery

This surgery is performed by the oral surgeon. If there is a discrepancy in the bite, the jaw will be moved so the upper jaw and lower jaw come together correctly.

~19 years old: Nose Reconstruction

The plastic surgeon performs this surgery to correct the misalignment of the nose.

~19 years old: Flipper Fabrication

A prosthodontist is essential as soon as braces are removed. The prosthodontist will make a prosthetic device to replace the missing teeth until a definitive treatment plan is decided upon.

~21 years old: Dental Implant Placement

Dental implants should be planned by the prosthodontist and placed by the oral surgeon. These will take 2 months to heal before crowns can be placed on them.

 

 

Of course, there are alternatives to some of the treatments listed above. For example, instead of dental implants, a patient may decide a removable partial denture or fixed partial denture would be a better option in his or her particular situation. I will address specifics in later posts, but please feel free to ask any questions or comment on what you would like to be added below!

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