Thirteen years ago was the first time I had ever experienced the cold bed side manner doctors can have. It was a practice with about six different Pediatricians but I saw the same doctor all the time. Than she married and changed her schedule and I had no choice but to see some of the other doctors and so I did until I got the “rude doctor”. This doctor did nothing but criticize me, Emily was too small and I needed to supplement because breast feeding was not working (according to him) and I was neglecting my toddler because he still did not know how to ride a bike with training wheels (according to his expertise). Really? This was our first visit with him but almost two years with this practice. I was young so I was used to the unwanted advice but I knew how to take care of my children. I tried to complain with the office manager and request to not see this doctor again but she was married to the jerk so it ended in no positive result.
My second run-in was about 5 years ago when Gabriel managed to get a corn kernel stuck in one of his ear canals. It was stressful because the one doctor who could help us did not take my insurance and she refused to take cash payment because we did have insurance. We ended up traveling almost two hours to another doctor who tried to extract it while holding my son down which could have ended in a disaster had we not decided against it after my son freaked out, and although he did nothing for us refused to return us our $200 office visit fee. I did not know what to do and I called the first doctor back and begged her to please help. After hearing me cry hysterically on the phone because I was so worried she told me to go to the ER and they would page her and she would come in and perform the extraction while he was sedated and this way she would get paid through thte hospital, nice right!
I thought that was as bad as it could get, of course that was before I had a child with special needs. From the first few days of Sophie’s birth I began to experience that cold bedside manner. I remember thinking to myself, why are these people in this profession? In the NICU I also felt it from some of the nurses it was so frustrating.
I just don’t understand how someone can sit down calm, cool and collected look right into your eyes and tell you your child will most likely not survive. In our case we were handed a two page internet print out from the computer with the percentage of survival rate for my child written in scribbles atop of it, we were given the horrific diagnosis and left alone. There were two doctors that gave us the diagnosis. One was a female, she was the doctor present at Sophie’s birth. The other was a male doctor who took over Sophie’s care when she was transferred to the new hospital. They walked away as if they had just told us our vehicle needed an oil change. The following day while I was visiting Sophie in the NICU the male doctor stopped by to check on her and told me “I have seen children with brain injuries who were given less than 10% chance of survival overcome it and grow up, don’t ever lose faith”. I don’t know if he just felt sorry for me watching sit there for hours and hours everyday talking to my girl and waiting for her to get better or if he realized how cold he was with us with her diagnosis. At least he proved to me he there was still some humanity left in him.
The worst experience I have had to date even after Sophie’s diagnosis was with a neurologist. Sophie was about 11 months old and we were there for a genticts-neuro follow-up. The geneticist with several medical students had been in the room for a good ten minutes talking to us and gave Sophie a little physical exam, they were all astounded witht her progress considering the size of her deletion. The neurologist came into the room and introduced himself, he seemed impressed with Sophie’s progress and familiar with Cri du Chat Syndrome. He went on to tell us how great she looked and how response she was, he said she seemed to be doing nicely overall.
And then he measured her head and his demeanor changed completely. The next thing I heard was “oh no no no no no, this is no good”. I remember saying well she does have microcephaly and his response was that her head should have grown alot more and it had not grown in over six months. He then went on to tell us he did not expect her to progress for much longer and she would stop developing. He told us he saw a grim future for her that she would never understand us (although she already did) or that she would never walk or talk and possibly would not survive long. I left the visit crying. We were about an hour from home and my husband was with me this time. After a solid fifteen minutes of cry and feeling sorry for myself my husband asked me “aren’t you the expert here”? I looked at him cluelessly and he proceeded to tell me “Aren’t you the one always telling me not to listen to what these doctors say” and he was right I always did say that. He also asked me if this doctor told me anything I had not already been told and I realized he was right I had been through this already. And finally he told me to look at my little girl and with that he brought me back from that horrible place.
As I look back I realize it was the coldness in his voice that affected me so, the manner in which he spoke of my child as if she was a thing of no value. Through out the last few years I have run into some ignorant people in our hospital runs and doctors appointments but it’s the lack of emotion in the way they express themselves that makes it so much worse. I wonder, if the tables were turned how they would feel if someone talked about their loved one the way the talk about ours.
I have realized not everyone in the medical profession is in it for the love of it. But really, these are our children when did it become acceptable to treat families as if a child’s life is worthless. In my new task of finding new specialist’s for Sophie I hope I do not come across another doctor with horrible bedside manner but if I do, I’m pretty sure I know how to handle it.
In my daughter’s support group there are only positive medical professionals allowed!