reflections related to disability advocacy, family and (needed) cultural change
Sunday, January 24, 2010
Medical Profession, Heal Thyself. Now!
When my oldest daughter was 11 days old she got sick. She was logey, wasn't feeding, was sleeping (which trust me, was wrong.) She didn't have a fever, but she just was not right. I called the doctor's office and the person on the phone told me she understood my anxiety being a new mother and all, but I should just hold tight and try to give her more fluids, especially since our own doctor was off that day.
A couple hours later I called them back and that phone lady heaved a heavy sigh and said, "Okay, you can bring her in if you can't handle things."
I packed her and all the stuff you have to pack to mobilize an infant. All the while telling myself that I was NOT being stupid and I was doing the right thing, and even if I WAS wrong it was better safe than sorry, and d---mmit I AM handling things!!!! This IS handling things....
We were with the pediatrician for about 5 minutes when he walked us over to the emergency department of the attached hospital for a spinal tap. She was admitted for meningitis...
And when my youngest daughter was having seizures in the arms of a neonatologist (who is also a dear friend) that same office staff reluctantly agreed to see her only after I insisted... She was tested.
Was she seizing? Of course she was...
Our doctor changed office shortly after this, which is the only reason we are still with her.
All of that is ancient history of course.
Or so you'd think.
Last week my friend was talking with a mom she knows who is in her 40s. This gal took her 10 year old grandson to a local clinic. This mom/grandmom is petite, looks really young (bless her) and is from a lower SES... She was dismissed out of hand by the physician until she finally said something they understood as meaning 'this wasn't her first time around the block.' Only after that did they really look at the boy. And yes, they found some real problems that needed real treatment.
The doctor then apologized and said, "We just thought you were another teen mom...."
Now I would have pointed out that it was impossible for a 16 year old mom to have a 10 year old child, but this gal is smarter than me.
She said, "What if I was? What about my age would mean that my sick kid wasn't sick???." She told them outright that they needed to treat people better.
And yesterday... yesterday takes the cake.
My next door neighbor's daughter (who used to babysit my kids!) was over and her 4 month old son (who also has Down syndrome, interestingly) was sick. The mom called the doctor to say he was having trouble breathing. The on-call told this first-time mom that he was fine and they didn't want to see him unless he had a fever.
They dealt with that for a little while and then asked if I would come look at him. (I'm a nurse though I work with adults--old adults!) He didn't have a temp, and my stethescope was bigger than his entire body, but he was really struggling to breathe even when asleep... I said I thought I would want him seen if he were mine, and suggested calling the doctor's office again. I said this time tell them you want him seen--don't ask, just tell.
They were sent to an ambulatory after hours center--who called an ambulance. Today he is in intensive care on a ventilator.
I know everyone needs healthcare and no office can see everyone every day. Some kind of gatekeeping is probably necessary, but must it consist of profiling and preclude listening??
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.