I have a teenage daughter who has a serious medical problem. She has had several surgeries and has missed many days of school because of her illness.She does not look sick or compromised in any way so her symptoms are often minimized. This past year was very challenging and she was very ill. I think the Doctors were beginning to think we were both nuts because or her many and varied symptoms. Frustrated, I finally took her to a large, well known medical facility. Prior to her appointment I picked up her radiology reports and read through them. To my surprise I found out things that we had never been told. Obviously these records had never been fully reviewed though the information had been in the reports had been available for years. When I arrived at the health facility I had their Doctor's review the films and they were able to verify that my daughter did have a very rare, life threatening syndrome.She had been treated for one part of the syndrome. There are very few living adults with this disorder. My daughter is feeling much better now that she has had additional treatment. She has been able to return to school and life. I just cannot even grasp that this has happened with all of the medical intervention she has had over the years. I just think of all of the wasted suffering and all the time I missed from work and it makes me upset. Do I have any legal options?

Contact a medical malpractice attorney in your area. I don't know where you live, but if there is a case, many places only have a statute of limitations of one year from the date of discovery of the mistake until the date of filing a case.

You haven't told us what her medical condition is and obviously you have spent a lot of time and money searching for a cure so she can get on with her life. I am happy she is much better and able to attend school like a normal young person.

As for legal issues, I don't think you have any recourse unless you kept accurate accounting of diagnoses and dr. names during the times she was being treated. In Canada you would put an issue into the College of Physicians and Surgeons if you thought a doctor had not performed properly, but unless she was misdiiagnosed to the point of having her very well being and life threatened, I don't think you have recourse. Although it would be a good idea to put your thoughts and feelings on paper and send them to a governing body of physicians in your state and see what happens. It may be long and drawn out though, unless you have documented everything.

She was being treated primarily for a complex heart defect which we now know is only one part of a syndrome that includes an absent spleen ( hence the chronic infections). We now know she also has some malformations in her GI system, and organs that are in atypical locations in her abdomen.

This one would be a difficult case, especially if you have been dealing with specialists. A heart specialist will concentrate on heart problems, etc. If the disease affects multiple systems, it can be hard for a specialist to see the big picture. And then, if the disease is very rare, it's even harder to diagnose, because physician's are trained to start with the most likely cause and eliminate it, then the next most likely, etc.

And at the end of the day, if you are contemplating a malpractice suit, you will have to find a doctor who is willing to say that the other doctors did not provide a level of care that was reasonable and expected. In other words, if you had taken this case to 100 doctors, how many of them would have gotten the correct diagnosis? Misdiagnosing flu is one thing, misdiagnosing a very rare medical condition is not likely to be seen as malpractice.

Thank you for your responses. I guess the thing to learn is, always get copies of your records and review them. Even though the syndrome is rare it was indicated in the radiology report. No one reviewed the whole report. I am glad that I did.

The rarer the disease the harder it is to properly diagnose. Doctors are very busy people and don't always read everything in a patient's file like they should. Glad you finally found a doctor who gave the correct diagnosis. I had a friend who had a very large bust. Her back was out of whack all the time. She went to 23 different doctors and no one could properly figure out why her back hurt like it did. The 24th doctor properly diagnosed her problem - brassiere straps cutting off the nerves to her shoulders and upper back. She was told to wear strapless bras and her back pain instantly went away. Were the other doctors to be held for malpractice due to not giving her the proper diagnosis - I don't think they could be held responsible. I just think they were not good doctors. The same is true with the doctors who treated your daughter. Some doctors are better than others.