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This one is about: David's Story: Sphincter Pharyngeoplasty

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David's Story: Sphincter Pharyngeoplasty

David was diagnosed with Pierre Robin Syndrome at birth and they performed a tracheostomy when he was three days old. He has had tubes placed in ears two different times and also the t-tubes removed. David's palate repair was done at 15 months, during the same hospital stay, they removed the trach. They had to surgically close the stoma when he was 22 months old, since it did not close on its own.

He was diagnosed with Stickler Syndrome just prior to turning 5 years old. His stickler symptoms include nearsightedness, astigmatism, eye muscle problems, and many joint concerns. He has had one surgery to repair the eye muscle.

He had his adenoids removed when he was 6, they were enlarged and this was necessary to prepare for the loose sphincter pharyngeoplasty. The pharyngeoplasty was necessary due his extreme hyper-nasal speech and the problem with food coming out of his nose.

He had the first one surgery done when he was 7 and the last one done at 8-1/2. Our PS uses this most of the time to correct nasal speech and food coming out of the nose.

The first time he had it done, we were unprepared for the recovery. There was lots of swelling and he had lots of trouble sleeping. He had to learn how to breathe through his mouth, due to the nasal swelling. We tried a CPAP breathing machine and it didn't help. I don't mean to scare you, but I always relate my experiences the way they were. David does have Pierre Robin Syndrome and asthma, so his small airway contributed to the swelling issue. However, it improved his speech greatly and he no longer had food coming out of his nose. He was on soft food for three weeks. During the surgery they discovered a 3/4" slit in his palate that they repaired also.

The revision was due to the fact that the right side completely came undone. We had no idea that was what had happened until he was in surgery. The PS thought he was going in to tighten it, because his speech was hypernasal. That recovery was much easier because we knew what to expect and it was much easier on David.

In conclusion, I have to say it tremendously helped David. People have very little trouble understanding him now. He still goes to speech twice weekly and they are refining sounds. Most of the work they are doing is to correct his "bad speech habits." He also has a tendency to get lazy with his speech.

Nancy B, mom to David (age 9 with PRS, SS)

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