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Had two heart surgeries and hernia repaired. Had UTI. Could it be Nager Syndrome? Suggestions

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Pediatrician, Pulmonology
Practicing since : 2003
Answered : 1802 Questions
My grandson was born premature at 26 weeks of development weighing 2lb. 5 oz. Mason's jaws will not open at all. We have been told he also has a cleft palate. He had a trach & vent at 2 days and has a feeding tube. He has had 2 heart surgeries and today had a hernia repaired along with having his testicles brought down. We have been told he is deaf and has been fitted with hearing aids but they do not seem to have any afffect. XXXXXXX has many genetic problems, his 2nd & 3rd toes are together, his ears are tiny, his penis has the hole in the underside not the tip, his hands are not formed quite right. I know that he can see, although Dr. has said his sight is probably poor. He is now 13 months old and weights 16 lbs.& is about 22 inches long. His arms are slightly short. He can be off the vent for short amounts of time. He has alot of UTIs due to kidney reflux. Mason's parents have had DNA testing but the Dr, can't pin point where the problem comes from. I am wondering if he could have Nager Syndrome. Also we would really like to have his jaw surgery done. We worry about his teeth, and feel it would be so much better for him to be able to yawn, sneeze, and smile! XXXXXXX is going to a large Children's Hospital but the plastic surgeron won't even discuss the surgery at this point. We hope that he may someday get off the vent if only his mouth would open.
Posted Mon, 3 Jun 2013 in Child Health
Answered by Dr. Arun 4 hours later

Thanks for writing to health care magic.

Your grandson has probably a craniofacial syndrome like treacher XXXXXXX or naglers. This can be confirmed only after a proper physical examination. Plastic surgery for jaw is usually done later on during prepubescent period. This is mostly to prevent malformations in growing bone if done early. If hearing aids don't solve his problem further evaluation is needed by audiologist. Do keep your hopes alive.

Wishing your grandson good recovery.

Dr Arun
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