Yes, Rose fell into the hands of Dr. Hodad and those who collaborated with him. But she did not die. From her story, we can learn why it is worth doing everything possible to avoid the hands of death and destruction in the first place.
Every day, somewhere in the world, someone is having a surgery like Rose needed. There are surgeons who have spent many years perfecting the most complex surgery in the chest, aortic surgery, along with replacing the aortic valve. Rose had been born with BAV, and she also had an ascending aortic aneurysm.
Referred from doctor to doctor in her local city, Rose trusted the doctors she met, trusted them with her life. She believed that she would be referred to the right surgeon, with the right skill. She entered the hospital and had surgery. It was far from ideal, but she came through the complications. With time, she should have been feeling better and better.
I remember being told, I think by the anesthesiologist, that the surgeon who would replace my husband's critically narrowed BAV was a good technician. That was over 20 years ago. I didn't appreciate it then as much as I do now. Knowing now how complex that surgery was, I know that the surgeon was at least good enough to get through the challenges - a man in heart failure with a critically narrowed, extremely calcified, and abnormally small BAV. I can imagine a very different outcome with Dr. Hodad. Although, as Dr. Makary writes, the best technician may not be charming like Dr. Hodad, it is important to get the very best skill available to you to save your life.
Years later, my husband had aneurysm surgery. I remember a nurse telling me that his surgeon had "golden hands" and would be her choice. I didn't fully understand the importance of what was said. This was not just being polite. This was someone who worked there and saw the outcomes, day after day. Dr. Makary writes about asking the "insiders" about the doctor you are considering. Those who work there will have more information than you do, if you can find a way to tap into their world.
Finding "Dr. Right"
Often the Bicuspid Aortic Foundation is asked about physicians who can help those with BAV. This is such a difficult dilemma for us all. We do not have enough information to help find Dr. Right in the many places where he is so needed. What we can do is encourage everyone to do everything they can to find Dr. Right and flee from Dr. Hodad.
For those with BAV, medication cannot solve their problems, and surgery and surgeons are extremely important. Thinking about Rose (not her real name), my own family, and the larger genetically related BAV family whose lives all depend on surgical skill, there are things we can do to help ourselves:
- Referrals given may be to Dr. Hodad, not to Dr. Right; you can refer yourself to surgeons in order to find Dr. Right
- Educate yourself about the procedure you need and ask the surgeons you consider many questions
- Think in terms of the best skill based on results, not the nicest personality
- Other patients may not know enough about what happened to them; ask the "insiders"