Questions and Answers about Pierre Robin Sequence surgery

We understand that even after your initial visit you may still have questions.

A family with a child that has Pierre Robin Sequence and a soft palette cleft came to see Dr. Hobar.   Here are some questions and answers that came up following that visit.

We were wondering if the 12mm distraction is a standard for this procedure or if it is based on my child’s specific measurements (i.e. specific measurements from lower jaw to upper jaw)? Does this procedure over-correct the chin?

12 mm is just an estimate. We will make a final decision on clinical signs and the way the lower gums line up with the upper gums. We will aim for a slight overcorrection to get maximal clinical benefits and with the understanding that the upper jaw will likely grow more than the lower jaw. We will not do an overcorrection to the point that it is noticeable. Your child will look even better after the distraction, although that is not the reason to do it.

Dr. Hobar mentioned that the metal spacers stay in for a total of about 8 weeks. How long do the brackets on the outside of the jaw/ face stay in place? Is it just during the lengthening process or for the entire time?

The bars are designed to come off, but sometimes the skin covers them and it is much less traumatic for the child to leave them on until we take the distractors out. We will decide this with you as part of your child’s treatment plan.

Does a mandibular distraction affect the natural growth of my child’s chin? We have heard that this procedure can make the chin look “mechanical” in the future.

Yes, the procedure can definitely affect the growth of the chin.  In most cases the chin looks better and very natural. But if, at a later stage, you and your child aren’t pleased with the look, we can make final aesthetic corrections, if you choose.

Would you recommend doing the surgery immediately or waiting until we can repair the cleft palate at the same time as the removal of the metal spacers?

If we are doing the surgery to help your child breathe better, use less oxygen and energy, and provide some reserve should the child develop an upper respiratory infection, there is no cause to wait.

Is there a risk of damaging my child’s  permanent teeth?

Yes, there is some risk, but I reduce that risk by going behind the tooth buds, thereby reducing any trauma to the area.

We also wanted to ask about the hospital stay… I believe you mentioned staying in the ICU for one day. Will my child remain in the hospital (not in the ICU) longer than that?

We generally recommend keeping your child  in the hospital 3-5 days to make sure everything is ideal and the child is healing properly.

What will recovery be like? Can my child feed from a bottle during this time or will they have a temporary feeding tube?

If we put in a temporary feeding tube, it will just be for a day or two. Generally your child can start feeding from a bottle as early as the day after surgery.

Finally, will the mandibular distraction immediately help with my child’s breathing? Also, will this procedure likely affect the speed and ability in which my child can feed?

Yes to both of these.