PS to UGH

I belong to a support group for PRS. Its a fantastic group, can't say enough good things about the Peirre Robin Network. There is a link to it on the side of my blog. A new member with a 4 week old son was concerned that he had failed the hearing test, as is frequently the case with PRS babies- the condition causes narrow canals and sometimes flatten faces so the amniotic fluid cannot drain from the ears. Often tubes drain the fluid and things return to normal. Today, however, I saw this response from another member of the PRS network:

My son has PRS, and is now nearly 11 years old. He didn't have any hearing issues until he was 8 years old, when he failed a hearing test at school. He had fluid in his ears which didn't clear up, so his ENT recommended PET, but also recommended a CT of his middle ears to look into the hearing loss further. The PET didn't improve his hearing, but what the CT showed was a bony fusion of his incus and stapes (the tiny bones that conduct sound waves) in both ears, with the left being worse than the right. According to our ENT, this is common in PRS children. He currently wears hearing aids. He will be a candidate to have surgery to "unfuse" these bones when he is older, and bigger.

So, while the fluid issues for Joshua may clear up as he gets older, there are other issues that can develop.

Really?!?!?! I mean CMON REALLY?!?!?! Maybe because they didnt catch the fluid early enough it didn't help, but since its a bone issue maybe the fluid is a moot point. I can't even type the anger and sadness I feel right now. First and foremost, I was really hoping Ellie would be one of those babies that "outgrows" her PRS. Maybe she still will be. Second, you tell this to a father of a 4 week old?!?!? Way to scare the SNAP out of him. Look Im all for giving the heads up with this condition but good Lord. Let the man come off the wave of confusion and depression that accompanies this before you start slamming with all the "Great" things that happen as the PRS babies age. Her son is 8, why not let this baby get to age 8 and have a question before warning him of a possible bridge ahead? Let him get there, ask about i, and THEN cross it!?!?