[Updated May 14, 2013. See bracketed text.]
I recently read the self–published nonfiction book of Nikki Polidori [a Connecticut resident], entitled “Lamby: A Mother’s Journey Through a Twisted Medical System to Save Her Son.” Like the last book I reviewed, “Lamby” is a true story of the dangers caused by a dysfunctional medical system. The book is a transcript of her diary during the early years of her son Dylan, who was born in December 2005. Dylan exhibited aberrant symptoms shortly after birth, which noticeably disimproved. These included a seal–like barking cough, severe diarrhea, fevers, projectile vomiting, and choking episodes. Sadly, the many physicians whom examined him made about as many mistakes and misdiagnoses. She found herself often in conflict with the doctors, as her intuition was contrary to their opinions. She has two nursing degrees, but her work as a nurse didn’t sway the doctors. Dylan endured much medical treatment, including oral steroids, antibiotics, and a failed heart surgery. It wasn’t until 2009 that he finally received the correct diagnosis. “Lamby” is a stupendous book, further proof that patients should not blindly accept doctors’ advice about severe conditions without their own research or further opinion.
Email Interview with Nikki Polidori
1. As a nurse, why didn’t you give yourself credit and put trust in your own medical knowledge, as opposed to the expertise of the doctors?
Being a nurse helped me know what symptoms I was dealing with that weren’t normal. Also, that weren’t safe. Because of my degree, it often put the doctors off. They would say, “Oh, you are a nurse?” It actually wasn’t a good thing, as I was treated like I couldn’t know what was possibly going on, medically, with my child, as I didn’t have as much education as the doctors did. (And I was always asked what field I was in, which was ONCOLOGY, so they figured since it wasn’t pediatrics they were more knowledgeable.) It was disappointing…but because I did know that certain things happening with my son were not right, I never stopped pursuing treatment and explanations. When enough “doctors” tell you to just deal, you start to believe it. The difference is I never accepted that. Being a mom and having the intuition I did about Dylan’s condition was actually more powerful than the medical part. I was just educated enough, in medicine, to keep him out of the hospital when he couldn’t breathe, because I knew how to treat him and what to do.
2. In your story, you got the right help for Dylan when you spoke to family and friends and they suggested physicians they knew, and those physicians ended up having the best ideas. Some people, when dealing with the difficulties of the medical system, turn to support groups or other groups that can give them ideas about dealing with their medical problems. Did you try talking to a support group in person or online?
I actually joined a support group for [acid] reflux, when I was told to accept that diagnosis. Some of the tricks I learned from the group helped with Dylan’s symptoms, so that was good. One conversation actually spoke about esophageal conditions or cardiac conditions, which is why I wrote my friend, the cardiologist, in Philadelphia for her help. After that, I didn’t find much in the form of support groups for Dylan’s symptoms, based on what the doctors had told me. By age two, for Dylan, I had found a few doctors that I trusted and were working WITH me so they were great resources.
3. On page 60, the medical group of Dr. Guitano informed you that he was disemployed and he went to work for an insurance firm. On the same page, you wrote about how you called Dr. Guitano’s new employer to complain of his past care. On page 65, you recorded letters of complaint to Dr. Barclay and Dr. Boyer, informing them of their misdiagnoses and other poor care. That took a lot of spunk, but I agree with you, because medical personnel need constructive criticism to improve from their mistakes. Did you ever get any response, though, from those doctors or their companies?
When I address Dr. Guitano and his superiors, I was not given anything more than he has left our facility and moved on. What I did hear, through the grapevine of medical people I knew, is that he had messed up a few times before, and this was the last straw for him so he chose to leave, rather than being fired. I also know that he is aware of how bad he messed up on Dylan. A physician Dylan sees now is friends with him and had discussed the situation with Dr. Guitano a few years back.
As for the insurance company, I spoke to a claims adjuster, the administrator to the medical director and sent a letter to the medical director himself. I never heard anything from them but made sure they knew that they had paid for these expensive tests, which the doctors misdiagnosed my son with, and then turned around and hired Dr. Guitano. Ironic and frustrating!
4. On page 58, you wrote about the idea of suing the doctors, especially Dr. Guitano. It’s probably too late to sue now. But do you think a lawsuit would have helped at all?
The summer after Dylan’s first surgery, I pursued a lawsuit but, after the legal team had gathered all the info and reviewed it, and at the time Dylan was supposedly “fixed,” they said nothing would really come of it because no permanent damage had occurred.
What I never did, because timing had run out, is go back and pursue the doctors who initially messed up as well as the surgeon who did the first surgery. There is no way, when he opened up my son, that he didn’t see the mess inside. All he had to do was tell me about it and we could have worked on getting it fixed sooner. But by the time Dylan was operated on and healed, time had run out. And I was so drained from the stress of my failed marriage and Dylan’s health, I wasn’t up for fighting with anyone…which is why I wrote the book.
My last thought on this is, for some reason, it was almost good the first surgeon kept quiet. I am not sure I would have come across Dr. McKenzie and his new procedure…life has a funny way of making things work out. Dylan probably would have a bunch of medical issues and have had repeated surgeries, had we not been with Dr. McKenzie.
5. Many of the doctors who checked Dylan made misdiagnoses and then prescribed or suggested treatments for those misdiagnoses. The only physician who admitted he lacked the knowledge to help was cardiothoracic surgeon Dr. Kimball. You wrote about how things might have gone better if some of the other physicians had admitted that they didn’t know how to help. Do you have any more thoughts about the importance of honesty in medical care and in the marketing of medical treatments?
Honesty in the medical system? It used to be there. I have seen too many times information not be transferred from doctor to patient because of pride or because of a power trip. For the most part, there is so much referring to specialists that goes on these days, because of the fear of missing something out of a doctor’s scope of practice, that it actually hurts the patient because no one looks beyond their specialty for diagnosis and treatment. Everyone in the medical field needs to slow down and remember why they are there. They need to LISTEN to their patients and the patients’ families and communicate with other doctors caring for that patient…sending letters about someone’s visit is necessary but does not help treat or diagnose properly anyone. Old–fashioned thoughts about how the whole body working; it shouldn’t be an abnormal concept.
And to those physicians who think they are better than their patients, please rethink your approach. So many people suffer, unnecessarily, from your inability to listen and be honest.
As for marketing medical treatments, I think all this advertising makes a lot of people think they need to try this or that. Then the pharmaceutical and medical products companies push their new product on the doctors. These things are pushed onto anyone that comes through the doctor’s office complaining of symptoms that fit with this “new” drug or product. It isn’t right. Products are rushed through trials and we are treating ourselves with so much excess it is making things worse. Just recently, my son, who is four, was given a new inhaler to try. This is after using a bunch already. When I researched the new product, I found there are no clinical studies on children under six, that the studies on children 6–12 were inconclusive, and that my son wasn’t the only patient using inhalers that was switched to this new one. It is a marketing issue, a disgrace to medicine and a risk I am not willing to take with my children. I recommend everyone double check what medications they are on and if their doctor offers a new one when their old ones are working, ask why and do some research. With the Internet these days, it isn’t hard to do.
Thank you so much for review. I appreciate your time and hope that your bad experience with the medical system hasn’t left any permanent “scars”. I often do healthcare consulting for individuals so if you ever have a question, feel free to write.
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Thank you to Nikki for the interview and for the autographed review copy!
Author: Nikki Polidori. Book: Lamby: A Mother’s Journey Through a Twisted Medical System to Save Her Son. Place of publication: Parker, Colorado. Publisher: Outskirts Press/SMA Publications. Date: 2013.