First and foremost, I want pediatric doctors who are smart, brave, and skilled enough to keep my children alive.
Secondly, I want pediatric doctors who will not frighten or dismiss my children.
Thirdly — and isn’t it always at best thirdly, where I come in? — I want pediatric doctors who can see me and the other adults around my child as valuable pieces of the puzzle they need to assemble in order to accomplish the main goal (see “first and foremost” above). There was never a chance that I would take either of my daughters to see a doctor who didn’t qualify for my first criterion, and if there were multiple options that fell into that category, I’d make the decision based on the best qualified in my second criterion.
I largely gave up trying to fulfill the third.
In fact, over the years, I stopped bothering to even tell pediatric doctors my name. They almost never remembered it. Every phone call from a physician began, “Hello? I’m looking for the parent of Samara Lewis?” When I said, “This is Debi,” invariably the answer would be “Are you a parent?” Even voicemails or messages I left with advanced practice nurses — the gatekeepers of the medical specialty physicians — in which I would leave my name would be returned with that same lack of regard for my individuality. I was “the parent of Samara Lewis” or, even worse, doctors and nurses would simply call me “mom.”
“Well now, mom, don’t you worry. We’ll see her in our clinic this afternoon.”
“You know, mom, sometimes babies cry and we don’t know why.”
“Is this mom? Nice to meet you. I’m Dr. Susan Smith, and I’ll be doing the anesthesia today.”
Despite the multiple scrawls all over every chart Sammi had in every doctor’s office, apparently there was nowhere for anyone to write my name. I fantasized about wearing a name tag: “Hello, my name is NOT MOM.”
Every so often, I’d be graced with a “Mrs. Lewis,” but no doctor ever looked me in the eye and said, “Debi, you spend every minute of every day with this baby. What do you think?”
The beginning of the final path, the one that led to the first big cardiac diagnosis, came in the fall of 2006. A friend had been visiting with her baby, who had been oozing green snot and gave Sammi a cold which had landed her in the hospital. Our pediatrician — a wonderful doctor who has still never, to this day, called me anything but “mom” — suggested we take Sammi back to see the otolaryngologist who had diagnosed her at 6 weeks with laryngomalacia. Freshly home from the hospital, I called that practice and waited on hold, nursing a dozing Sammi in my lap.
When I got the advanced practice nurse on the phone, I explained the story to that point: diagnosed with laryngomalacia at 6 weeks, multiple hospitalizations for respiratory infections, low oxygen saturation, chest retractions, very tiny for her age, wet-sounding breathing, and me feeling nervous and suspicious about her age and her reactions to colds.
“Sorry, mom,” she said, “we can’t really get her in to see anyone until November.”
“November?,” I asked, shifting Sammi up to my shoulder to burp her, “That’s two months away! That’s really the soonest?”
“Yes,” she said, “I’m so sorry. You can keep calling and see if anything opens up.”
I sighed, “Ok, I’ll take the first available in November.”
The nurse paused, “Is there static on this line?”
“Oh,” I said, moving Sammi back down to my lap, facing down, “No, sorry. That’s my baby. She breathes like that after she nurses. It’s loud.”
“That’s your baby?” the nurse asked, quietly.
I said yes.
“Can I hear that again, mom?” she asked.
“Sure,” I said, suddenly both frightened and hopeful. I picked Sammi up to a seated position on my lap and held the phone near her mouth. She rasped and gurgled as always. I brought the phone back to my ear. “Was that enough?”
“Yes,” she answered. “I’m going to get her in this week. Can she come in this week?”
We could. Mom and baby could come in that week, and did, that week and countless other weeks, over and over to that children’s hospital to see that and many other specialists. In all that time, only one doctor would ever call me and my husband by our names. It seems a small thing — and it was, in comparison to the quality care Sammi received — but dismissing me as anything but the next in the series of moms, the role and not the person, that made it harder.
Few medical professionals ever really saw me. They looked right through me — I became a ride back and forth to the doctor, a reporter of facts, a dispenser of medication, a cook for whatever medically restrictive diet Sammi would come to be on over the years. I was lower-case mom, and I resented it, even as I put that resentment aside in the name of answers and treatments.
It doesn’t have to be this way. I’ve communicated with many other parents of chronically ill children — or even perfectly healthy children — who have pleasant, personable relationships with their children’s doctors. Specialists seem less friendly, with surgeons the least likely to know even their patients’ names. This doesn’t make them bad doctors, and I’m willing to admit that it may be this detachment that allows them to get through years and years of what would otherwise be painful encounters with frightened human beings in pain. Disassociate, and what they’re left with are a list of problems to solve, not lives to improve.
Funny how that works, isn’t it? I would come to learn that lesson by osmosis.
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This frustrates me so much. We have been to four different hospitals (about to embark on the fifth), and I can only name two doctors who actually talked TO me and spoke TO me like a real person. In fact, I can only name on one hand the number of doctors who actually saw my SON as a person with complex needs instead of a case limited to their own scope of information. So many just have tunnel vision… I’m half tempted to wear a name tag like the one in your picture for our next appointment. 😉
I hear you, Alex! In recent years, I’ve started to stand up, look the doctor in the eye, stick out my hand and say, “Hi, I’m Debi, Sammi’s mom. It’s nice to meet you. Sammi, you can say hello too, and give Dr. XYZ a high-five.” At least for a moment, we are people with names, not the disease with symptoms and its chauffeur.
To all of you “moms” and “dads” yes we are people and one of the greatest pet peeves I have is being called “mom” by anyone in pediatric healthcare! Finally I see that I am not the only one that finds these terms should only be used by our kids!! When I took my first child to her first appt to the pediatrician I was full of pride when I was called “Mom”. But after hearing that over and over and over again, I realized how much it irked me and started to resent it. I even tell staff when they do it that my name is “Shirley”. I am a health care professional and I find it extremely lazy and insulting that these people can’t make the effort to know our names. Fortunately we now have our girls seeing my family practice doctor and I know she will never call me mom. Of course we had a trip to a children’s GI specialist recently and once again I was called Mom by every single person we encountered from receptionist to 2 nurses and finally the doctor. It feels good to see I am not alone. It’s weird how much it bugs me!
I hear you, Shirley! I actually understand it in the ER — I’d rather they spend every ounce of their brainpower helping a child through a crisis than looking at their notes for what my name is. It’s in the long-established relationships with pediatricians and specialists that I find it galling to be called “mom.” Keep telling them!!!
Pretty much only our child’s primary neurosurgeon and our pediatrician know both parent names, so completely depend on those people. A fellow and a resident have bothered to learn mine (fellow saw us with the attending, in emergency room, on call, on rounds, for surgeries – think he found my name helpful as using it would stop me from losing it, not the best year). But it’s all ok, usually takes me years to start feeling like I can fully relate to a doc. I’m so horrible with names myself, even if I like some doc the names don’t stick when someone comes by when I’m stressed or sleep deprived.
AJ, I get what you mean about remembering a doctor’s name — Sammi was always seen in a teaching hospital, and there was usually a gaggle of residents and medical students around the doctors. I admit to seldom remembering the names of residents and students, but then, I didn’t have a clipboard and computer in front of me with their whole history, so I think the name-remembering advantage was theirs! 🙂
I think many docs would question the point of establishing more personal contact when it is an intimate but impersonal (and brief) contact, less understanding of regular docs not doing this. Our surgeon implied to me that we would be working together until she ages out of the children’s hospital so it is ok to build better connections, I was just hopeful that she would need less of their time. I think he developes enough of a relationship to insure the best (quality of life) outcomes possible for his patients, I wish other docs were so adept.
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I have to say, I think you should own that title! Yes! I AM MOM!! Maybe I have a bit of a different perspective because some of my children came to me in different ways, and I didn’t start out as mom for all of them, so when it finally became official, I didn’t want to be called anything else! My heart breaks for every chronically ill child. Most of my children are special needs, and it’s just so hard to see a kid struggle with anything, whether it’s ADHD or a heart condition, because we love them so much we want to offer them the silver spoon kind of life, but I guess the struggles define us. They make us who we are, who we turn out to be, and for some, they end up as surgeons who forget to learn the names of the people who are most affected by the work they do! But maybe the glass isn’t half empty. Maybe it’s half full, because they see you are MOM, and that is a powerful force! Prayers to you and your family.
Tiffany, I agree with you that I am lucky to be my daughter’s mom. I definitely want her to call me Mommy — and that will never change — but I still don’t want people who I don’t parent to call me by the name she uses for me. We can hold both thoughts in our hearts: I am grateful to be someone’s mom, and I want to be treated as a multifaceted human being too. Thank you for helping me see both sides — and I hope your children find healing and peace in their struggles too.
I totally get this even just this week as an anesthiologist said to my husband and I you’re Mom and Dad. I extended my hand and introduced myself. The nurses called me Mom, the Dr’s called me Mom and my husband Dad. I waited a long time to hear someone call me Mom but I didn’t expect that adults in the medical profession would too. 😳 This is a great post my son spends a lot of time at the Dr’s too as the unravel the mysteries of his developmental challenges.
I hear you. Especially when the road is unpredictable and looks like it will be long, it would be nice to have partners who see you as a valuable member of the team. I bet the nurses don’t call the anesthesiologist “Anesthesiologist!”
So very true and so touching. We’ve also been through a similar situation, though I’m thankful to have a pediatrician and therapists who seem to value my opinions and who even call me by my true name.
You are lucky — and deserving! — to have those kinds of medical professionals in your life. I’m glad for you and your child!
I think your new way of handling it by introducing yourself is the perfect response. I hope it helps. Maybe when they still call you “Mom,” you can politely say, “Call me Debi” to reinforce it.
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