Interrupted ivc and deep vein thrombosis

My son now a young adult of 23 is looking for answers on how to live his life with no inferior vena a cava and not worry about the daily complications of deep vein.thrombosis .

At the age of 13 through a child hood sport accident we found that he had an interrupted ivc. We were told that there was nothing that could be done to fix it and it should not be a problem. Most people that have this anomaly never even know it and does not cause any problems to later in life.we thought later in life would be retiring age but st 17 our lives changed. He was complaining of back pain, a low grade fever, which the pain became persistent, enough that we took him to the local emergency at the hospital. They diagnosed him with having a sarcoma , which our hospital said they could not handle and transported him to chop. They proceeded to want to biopsy the tumor and while they were in there take out his appendix. After hours in this procedure the surgeon came out and told us that he had good news and bad news/ good news was it was not cancer- the bad news he peeled this mass back like an onion and was not sure what it was. Knowing my son had an interrupted ivc I found a white paper that mentioned it could be thrombosis in his abodomen. The hospital said no and sent him home after five days and would have to evaluated evaluate this further. He was sent home with the same back pain. Within four days of being home his pain worsened and his bowels no longer worked and his legs were swollen and discolored. We went back to the hospital and were told that he had Dvt in both legs and completely occulsef and the so called tumor was a giant clot probably a vein that was possibly where the ivc was located. They did several days of ir intervention and also found out that he had factor five- a clotting disorder.
So my son is now 23 and has been living with this anomaly and is now having the similar symptoms as when he was 17. We are looking for someone who specializes in this anomaly and help him with the circulation with his legs. I am also reaching out to parents that if they have a son or daughter that may have an ivc anomaly to be aware that this clotting condition happens between the ages of 17 -21 not when they are old, also operating on a patient with this disease complicates there Venus system. Do reaching out for a miracle.