Fighting For Young Lives: Misdiagnosed
One day Jennings threw up so much blood that her mom, Marcia Maldonado, rushed her to the hospital.
“I can hear the nurses literally say, ‘She’s not going to make it, she’s really weak,’” Maldonado told Ivanhoe. “I’m just going crazy, [I was] like ‘what do you mean she’s not going to make it?’”
Maldonado wanted answers, and she got several. First, doctors said it was allergies. Then, it was mumps and an infection. Three doctors told her it was gastritis. Another said migraines. Then, a different doctor said he needed to split her jaw in half, and cut out what he thought was a tumor in her throat.
“I’m just sitting in front of him thinking, ‘This is really not happening to me,’” Maldonado said.
Something didn’t seem right, so Maldonado took Jennings to yet another doctor. After three months of watching her little girl dying, she finally found what was wrong with her daughter.
“It’s not a tumor, it’s her main artery [and] it’s about to burst,” Maldonado explained. “I felt like we finally have the right diagnosis.”
Dr. Alexander Khalessi discovered that Jennings had an aneurysm the size of a racquetball growing in her mouth. It happened when surgeons injured an artery during a routine tonsillectomy that had been performed six months earlier.
“If there was a breakthrough bleed from this aneurysm, you could bleed to death from your mouth,” Alexander Khalessi, MD, MS, Director of Endovascular Neurosurgery, Surgical Director of NeuroCritical Care, Assistant Professor of Neurosurgery, University of California, San Diego, told Ivanhoe.
Dr. Khalessi filled the aneurysm with coils to prevent blood from entering. He then used stents to rebuild the artery. It was the first time this surgery had ever been performed that preserved the artery.
You have a responsibility as a surgeon to use that opportunity to innovate for the benefit of your patient,” Dr. Khalessi explained.
Jennings would have died if her previous doctor removed the mass.
“I would have literally lost my child,” Maldonado said.
Between ten and 20 percent of all medical cases are misdiagnosed. A report from the National Center for Policy Analyses found that 28 percent of diagnostic mistakes were life-threatening or resulted in death or permanent disability.
In a survey, 96 percent of doctors said diagnostic errors were preventable, and half reported that they encountered at least one a month.
“I’ve had experiences where I think that if that patient arrived at a different hospital, at a different time, had a different set of doctors, that outcome may have been different,” Dr. Khalessi said.
Today, Jennings is back to being a kid.
“I’m thankful every day that she’s at home, dancing and playing,” Maldonado said.
Now, this mother and daughter can enjoy all the sweet moments together.
ANEURYSMS: An aneurysm is a bulge in the wall of an artery and if it grows to a large size it can burst and cause bleeding or even death even though there may not be any symptoms beforehand. Aneurysms can form in various parts of the body but the most common area is the aorta, the main artery traveling from the heart. (Source: www.nih.gov)
SIGNS: It has been estimated that about half of all aneurysms burst and typically there are no signs up until the aneurysm ruptures. While sudden death would be the most obvious and severe sign of a ruptured aneurysm, other times the signs are mistaken as something else and treatment is not sought. Some signs of a ruptured brain aneurysm are:
- A sudden extremely painful headache is the most common sign of a ruptured brain aneurysm.
- Vision changes, eye lid drooping, lethargy, speech impairment and seizures may also be the result of a burst brain aneurysm and some of these signs may also signify a stroke caused by the rupture.
DR. KHALESSI: “If I didn’t think that where you got care mattered then it would be very difficult for me to do my job the way I do. This temptation to essentially to be skeptical and not trust the advice you’re giving and essentially level the playing field and say that everything is essentially the same. The inconvenient truth is that everything is not the same. And so there’s no question that over the course of my career that I’ve had experiences where, I think, that had that patient arrived in a different hospital at a different time, had a different set of doctors, that the outcome may have been different. I think that we actually have a responsibility in the medical community to educate patients about their options, make them aware that there are solutions to things that maybe in other environments you wouldn’t actually find that solution. I’m not at all naïve to think that we can cure every patient of cancer or treat every stroke, but the truth is that there is an art to medicine in addition to the science and I think that there is an advantage to getting care in institutions that are at the leading edge of what that science is. Because then I think you actually have doctors who could be judicious about when you need to be conservative and when it’s important, in cases like Daniella’s, to push the envelope because you have an opportunity to save someone’s life.”
Alexander Khalessi MD MS FAH, Director of Endovascular Neurosurgery, Asst. Professor of Surgery and Neuroscience, UC San Diego Health System, talks about getting the right diagnosis.
What was to Daniella like when she came to you?
Dr. Khalessi: When she came to me she actually was neurologically intact, meaning she was able to talk to me. She was able to look in all directions and move all her extremities. The challenge was she had a series of bleeding events from her mouth from what we later learned was an unsecured aneurysm. Unlike when you have a bleed in other parts of your body when an artery is injured that’s a very high flow, high pressure bleed and in medicine we call that an exsanguination event meaning that she required blood transfusions potentially in order to keep her from bleeding to death.
Have you ever been involved in such a case where basically no one knew what was really going on?
Dr. Khalessi: Yeah, unfortunately that’s not uncommon particularly when you deal with problems involved with the brain. I think many people in medicine the brain is often considered a black box and there’s a lot of nihilism when it comes to treatment of the diseases of the brain. And so, unfortunately if you’re in environment or in a center where you don’t have experience dealing with those kinds of problems, unfortunately patients can go sometime without a diagnosis. And that’s why here at the University, UCSD, I’ve been really excited to be part of a larger team where we have specialists and in different areas that really come together to give patients like Daniella an opportunity for a full happy life.
Why was it misdiagnosed and not diagnosed for such a long time?
Dr. Khalessi: Well, I think that a tonsillectomy is one of the most common operations that we offer in medicine and so the reality is that it’s rare that you have a situation where you actually have an injury to one of the major arteries that provides blood flow to the brain so were dealing with a rare problem to begin with. Second, when you’re dealing with a mass that’s this large typically when we talk about aneurysms involving the brain we’re talking in millimeters. And so when you’re dealing with a mass that measures in centimeters it’s much more common to be dealing with a tumor, an infection that reaches that size when you’re dealing with the area around the mouth. And so I’m not altogether surprised that her doctors weren’t thinking that a catastrophic injury to one of her arteries with early diagnosis, but fortunately as we got further imaging that became more clear.Looking back, what happened to her that cost all of this?
Dr. Khalessi: It’s a difficult question, as a surgeon. I am neurosurgeon by training, typically when you have an injury in surgery that’s either something that happens directly under your direct vision or it happens because you’re actually using protractor’s or moving things to get where you need to get to do and there’s an indirect injury. So my best sense given that were dealing with a six-year-old girl is that she had very, very large tonsils and they were trying to remove those tonsils there was almost certainly a traction injury or a tear in the artery where it inserted into the skull. And as I mentioned when you actually have a bleeding event from that area that blood is going to actually create space for itself. And so what happened is over time this hole in her artery she essentially developed progressive narrowing of the artery and an enlargement of this giant blood clot that essentially was pushing in the side and in the roof of her mouth.
You said it’s very dangerous because there are three ways that this could have turned out a lot worse for her.
Dr. Khalessi: Right. If you could imagine the lining of our mouths, is it really designed to handle those high pressures? So, if there was a breakthrough lead from this aneurysm you could bleed to death from your mouth. And at the same time, if that blood goes down your throat you could potentially have that blood go into your lungs and you could drown. And then lastly obviously the artery we’re dealing with was the left carotid artery which provides blood flow to the dominant hemisphere of the brain. So, the part of the brain that’s responsible for our speech, our personality, and movement on the right side of our body. So if that artery had been completely blocked off then she would have had a devastating stroke and been permanently disabled or passed away.
What happens to the aneurysm?
Dr. Khalessi: That’s a great question. This aneurysm is essentially now an unorganized blood clot and one of the lessons in this is that there have been previous attempts to use coils to try to secure a giant aneurysm like this, but usually those coils have broken through and actually caused a bleeding event from the mouth and that’s required a very rapid sacrifice of the artery. So part of the artery this was using the stents in part to divert blood flow from the aneurysm and also to use the coils in a way that were sufficient to prevent blood flow from going in, but not so big that we’re committing her to a large mass that she’s going to have to deal with for the rest of her life. I’ve actually since seen Daniella in clinic and what we found is that aneurysm has contracted down with the lack of blood flow actually continuing to expand. We have seen that sort of reduction that we like to see and it’s not something that’s getting in the way of her swallowing, her breathing, or her running around and playing with her friends.
Would there be any reason why you would have to go in and take it out?
Dr. Khalessi: No, I can’t imagine there would be a situation. In the acute phase meaning, immediately after her procedure, one of the things that we would guard against is because it’s an implant and it’s near her mouth the only situation where we would have been potentially forced to go in is if she developed a secondary infection of that material. We were very judicious about giving her antibiotics and some other things to try and anticipate that and to protect those against those kinds of complications.
So this is the first time anything like this has been recorded in medical literature right?
Dr. Khalessi: Right, in this situation where you’re dealing with someone who’s had an injury to the internal carotid artery from a tonsillectomy. I think the reason that’s so important is because as we actually are continuing to offer patients procedures that are largely considered routine. We’re entering this whole new phase of medical care that I think it’s important to have that care in a setting where you can essentially manage all of the potential downsides. So, I think that for folks who practice ENT, or head and neck surgery, every day having the benefit of this kind of support I think is going to be really important to deal with that rare event.
So what was the key that allowed you to deal with this rare event?
Dr. Khalessi: I think it’s a combination of issues. I think in neurosurgery specifically we’re now entering a very exciting time where there were devices that flat-out weren’t available before that allow us to rebuild smaller arteries in the brain and in the neck in children that we weren’t able to actually reach before. A part of that is taking that technology and having the experience with those devices to actually apply it in potentially new clinical situations. I think there is a temptation in medicine to really try to treat a set of images as opposed to treat the patient in front of you and there’s no question when you’re dealing with surgery of any kind there are risks involved. I think that when you’re dealing with a downside that carries three very significant risks of passing away you have a responsibility as a surgeon to use that opportunity to enervate for the benefit of your patient.
Does it ever frustrate you when you see people who may have died or something where you knew that maybe if they just kept pushing?
Dr. Khalessi: Yeah, I understand your question. I think there’s no question one of the reasons that I became a surgeon and one of the reasons I practice in an academic setting is because I’m really committed to training the next generation of surgeons and changing the way surgery is done. If I didn’t think that where you got care mattered then it would be very difficult for me to do my job the way I do. I think that you’re asking a much broader social question and I think the issue is, as doctors, I think most of us devote our lives to taking care of people because we thought that being part of a profession mattered. I think that right now what you’re seeing, not just in healthcare but in other areas of the economy as well, this temptation to essentially be skeptical and not trust the advice you’re giving and essentially level the playing field and say that everything is essentially the same. The inconvenient truth is that everything is not the same. And so there’s no question that over the course of my career that I’ve had experiences where, I think, that had that patient arrived in a different hospital at a different time, had a different set of doctors, that the outcome may have been different. I think that we actually have a responsibility in the medical community to educate patients about their options, make them aware that there are solutions to things that maybe in other environments you wouldn’t actually find that solution. I’m not at all naïve to think that we can cure every patient of cancer or treat every stroke, but the truth is that there is an art to medicine in addition to the science and I think that there is an advantage to getting care in institutions that are at the leading edge of what that science is. Because then I think you actually have doctors who could be judicious about when you need to be conservative and when it’s important, in cases like Daniella’s, to push the envelope because you have an opportunity to save someone’s life.
FOR MORE INFORMATION, PLEASE CONTACT:
University of California San Diego