Cystic fibrosis (CF) is a genetic and fatal condition that affects the lungs and digestive systems. The average life expectancy at the time was only 37. This diagnosis not only shattered our world but we found ourselves physically living in a new home, a hospital. That may sound superficial but with a baby, comfort and sleep is paramount. We traded our cozy apartment of white noise machines, boppies, and tubby time for fluorescent lights, constant interruptions, beeps, pokes, prods and chilly sponge baths. Everything personal and soothing was replaced with sterile, harsh, painful, loud, bright.
For those three weeks, Addie had blood transfusions, respiratory therapy and saw so many specialists, by the end of the day I could barely remember my name. We were learning a new language, the language of CF and relied solely on doctors and nurses to translate. We were figuratively and physically at their mercy.
Our nurses were our lifeline. I remember one in particular, whose baby was the same age as Addie. She cried with me and visited even when she was off duty. Thank you sweet nurse. Our phlebotomist, who had the unfortunate task of poking my babe every morning at the crack of dawn, entered the room with a defeated sigh and apologized while extracting blood from the teeniest, tiniest vein and always, always got it on his first try. Thank you sweet man. I will never forget you sweating over that little hair of a vein. To this day, I don’t know how you did it.
When your child is inpatient, you don’t always have the same doctor. Because of this, there are differing recommendations and medications. For a family trying to understand the details of a disease, consistency matters. It wasn’t just learning a new language but also deciphering varying accents and dialects.
As we were settling into our new normal, a new “to us” CF Pulmonologist visited our room with a team of residents. It is protocol or at least a kindness for doctors to ask if the patient and family are comfortable with 10 other people in the room. We would have said yes, but she offered no choice and marched in like she was staging a coup, not visiting a patient. She didn’t talk to us, she talked AT us. Her affect and demeanor were intimidating and condescending. This was her show. We were merely players.
Some of what she said was incongruous with Addie’s other pulmonologists. I was so flustered by her harsh demeanor, I couldn’t even speak. After she left, I needed clarification and asked the nurse if it was possible for the doctor to return. A few hours later, the pulmonologist angrily walks back into our room (sans entourage) clearly annoyed and said, “I heard you had some questions about how I do my job?” She was almost yelling. I tried to form a response but she sighed through each one, huffed and hawed and acted as if this was a personal affront to her, like I was requesting extra pickles on my Big Mac not talking about my baby’s life.
California did not have newborn screening in 2005 so by the time we realized Addie had CF, she was severely malnourished. Despite nursing her constantly, she was considered failure-to-thrive. At four months old, she barely weighed 8 pounds. We had been vigilant in trying to get a diagnosis but CF is rare and it took switching pediatricians, a village of moms, a lactation counselor, friends and family in the medical field and a myriad of tests before we knew why. By that point, it was almost too late.
During one of my questions, this doctor nonchalantly but judgmentally said, “Well she almost starved to death, so what do you expect?”
If someone had punched me in the face, it would have hurt less.
I later spoke with another doctor about this incident and the response was, “She doesn’t have the best bedside manner but she’s a good doctor.”
Nope. Nope. And nope.
There is no such thing as a good doctor with a bad bedside manner. If your patients cannot trust you to ask questions, if you terrify or shame them, you are not a good doctor. Hippocrates' “first do no harm” extends beyond the physical treatment of patients.
Fifteen years later, I have a healthy child. She will always have CF, but we are well-versed in the language of care. Our experiences since have only been positive. We left this hospital for another and later moved to my hometown in Iowa. Our CF team is phenomenal. At each clinic visit, our specialists ask, “What other questions do you have for me?” They are purposefully opening up a door for us to enter, for us to feel safe, so they can help.
I wish I could go back to that day. I was a new mother, a deer in the headlights of chronic illness. But today, I am a strong, fierce advocate for my daughter and I have a few words for that doctor. I hope she reads this.
When you approach that bedside, you are approaching a family who was possibly given the worst news of their life. They haven’t slept and every comfort of home has been replaced with industrial toilet paper and bright lights. Even the language you speak is foreign. The uncertainty and fear is something they never dreamed they would live. This is your job, but this is their life. Be kind. You may be the director of the show. But the patient is the star.