My daughter was born with a Glomuvenous Malformation. A rare vascular disorder causing extra veins all over the right side of her body. A large lump of veins in her armpit, right arm and right hand. IT causes swelling of her arm and hand, and her entire arm looks blue, she is also prone to blood clots because of all the blood flow to her arm and hand. She is currently six months old and already has had two blood clots.
My husband and I spent the bigger part of the six months of her life searching and searching for any doctor that is knowledgeable about this type of malformation. We have found ONE doctor in the Manhattan who knows what they are but does not treat them. We have found ONE doctor who treats vascular malformations with Laser Surgery. We scheduled a surgery for feb 20th of 2009 and for the last month and a half have been arguing with Aetna for an In-Network Exception due to the fact there is ONLY ONE VASCULAR PEDIATRIC SURGEON in 100 miles of Staten Island. And of course he's not 'in the network'.
So after following everything they asked us to do. They found a 'participating provider' at NYU who DOES NOT do ANY LASER SURGERY ON ADULTS OR CHILDREN and WHO DOES NOT specialize in what my daughter has. As a matter of fact the doctor they referred us to is a DOCTOR OF PLASTIC SURGERY at NYU. Now if she needed a breast reduction, or if she had a port wine stain or a hemangioma of course we would be more than happy to go to the "participating provider" but thats not the case.
So after calling our peditrician and the laser surgeon to ask them to do Peer to Peer reviews with Dr. Terry Golash the Medical Director at Aetna he finally gets back to our peditricians office and explains to them that my husband and I need to go to NYU and do the research because "someone over there could definatly do it". I AM SO OUTRAGED that he would not even take the time to check out and verify the doctor he provided and see that it is not the correct doctor we need. Outraged at him, to assume that as parents that we did not take the time to already do the research on the "participating provider" he is suggesting. He does not understand the problem my daughter has, nor does he care.
Why is my husband paying Aetna out of his paycheck for health insurance that they REFUSE to provide. We followed all the right channels they asked from us. Now we are going to have to push my daughters surgery back to God knows when just so we can appeal his decision and fight with this hack of a company some more. As if my Husband and I are not going through a hard enough time trying to take care of a newborn, who has to have physcial and occupational therapy just to be able to use her swollen right hand, doctors appointments at least once a month, going into larger debt due to accruing doctors bills that werent' covered by our insurance.
To add insult to injury she's going to need more than one surgery for this problem that she has and I'm going to have to go through this kind of hassel everytime.
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