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  #1  
Old 04-17-2008, 08:14 AM
andrekotze andrekotze is offline
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Join Date: Apr 2008
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Unhappy Cavernous H

I read through this forum and must admit I now know we are not alone. Our twin daugthers were born 1st Feb 2008, prem 34 wks. The second twin was admitted to ICU immediatly after brith. She developed upper airway obstruction which became life threatening. A tracheostomy was performed to secure an airway. An MRI confirmed a large cavernous H (internal / deep) which is the cause of the airway obstruction. She spent 75 days in ICU and was discharged yesterday (16 Apr 2008) still wearing the trachy as they don't know what to do. She also developed a H on her left eye which looks like it is growing.

Does anyone know what to expect or have heard (had) such experiences? It seems like the Dr's are in the dark regarding the deep H in her neck and we desperatly need advice.

Kind Regards
André
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Old 04-17-2008, 07:33 PM
jgoodman0814 jgoodman0814 is offline
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contact dr levitin on this website. maybe he can help point you in the right direction.
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Old 04-19-2008, 11:35 PM
nickbar nickbar is offline
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Andre,

Where are you located? Please feel free to email me if you'd prefer not to post your location. I can help you get some opinions from experts. I would also encourage you to email Dr. Levitin as Jessica said, and also Dr. Fay about the eye, and the airway expert Dr. Jason Mouzakes from the ask the expert section of this website. Please let me know if you have any problems.

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