Wednesday, February 13, 2008

Letter #17

Dear Future Physician,

Let me start with saying thank you. Thank you for choosing to become a physician. It is my hopes that not only will you learn a tremendous amount of medicine, but that while in medical school, you’ll learn a lot about patients, and how it feels to be a patient, because those two, in combination can make for a great doctor!

My name is Dayna, and I am a mother of three young children, ages 7, 5 & 4. In addition to being a mother, I am also a patient advocate and speak on our families experiences navigating the medical system, this came about after I had a magazine column about what it's like to parent chronically ill children. I hope this letter will be short testament to the power a doctor has, and what one family looks for in a doctor.

This letter is taken from a blog post I wrote on my experience navigating the medical system with my three chronically ill children. All three of my children were born missing part of their immune system, the disease, once thought to be rare is generally only known to people as “The Boy In The Bubble Disease.” Yes, there was a real boy who lived in a bubble, but no, kids do not live in bubbles anymore.

I share this with you because of our experience with doctors, you see, for 3 years I felt something was wrong with my oldest child, and then with the second child I delivered, but I was repeatedly dismissed by doctors of different specialties, including a pediatrician, a Gastrointestinal Doctor, and a Pediatric Infectious Disease Doctor.

I was told that I needed counseling because I was an overreacting first time mother. I was told that my daughter was too fat to be sick and that fat babies do not get sick, and that I should stop taking her temperature, and stop taking her to the doctor. I was accused of being a germaphobic parent.

All the while I kept trying to explain that it didn’t matter where I went or what I did, my children kept getting sick. I was alarmed and scared, and I was repeatedly dismissed and made to feel crazy. Despite all the doctors that kept telling me everything was okay, in my heart, I felt like something was wrong – call it my Mommy instinct.

In the end, when I was pregnant with our third child our first two children were diagnosed by an expert in pediatric immunology as missing part of their immune system. They were put on IVIG, and their symptoms were greatly lessened. Our third child was born, and at six months diagnosed as also missing part of his immune system, and started on plasma derived IVIG by the time he was one year old.

I spent some time being angry with the doctors that dismissed my concerns, I worried what would have happened had I not listened to my instincts, had I not found a doctor who would listen to me.

I now know that our road is not unlike most who deal with immune disorders, in fact according to a study done by the Immune Deficiency Foundation, the average time from the onset of symptoms to diagnosis in the US is 9.2 years. In that time many patients experience many infections that leave long term damage to major organs such as the lungs, damage that is not reversible.

After navigating the medical system for the past five years, as we've added more and more specialists to our team...pediatric infectious disease, GI, ENT, dermatology, rheumatology, and immunology... I've learned what kind of doctor I want on our team.

We don't care if the doctor we see knows the most, I want the doctor willing to learn or investigate the most

We don't care if the doctor we see has the nicest office, we want the doctor who is nicest while in his office, not just to his patients, to his staff as well.

We don't need a doctor who can talk with authority on everything he knows, we want a doctor who knows what he doesn't know.

We don't need the doctor who can solve everything, we need the doctor who can find someone who can, when help is needed.

We don't need the doctor who will do all the talking, we need a doctor who can listen.

We don't need a doctor who always agrees, but we need a doctor whose opinion I can respect when they do disagree.

We’ve also learned that the best doctors are the ones who know that I will know more about my child, and their disease then most doctors do and will take a moment to learn from our experience.

I've learned, over time, that my job as the parent of a chronically ill child is not just to be concerned with physical health, but I need to keep their psychological well being in mind too, and at the same time, I need to help them learn to navigate the medical system as well.

They need to learn now to speak for themselves, because someday, that will be their job, and if I don't equip them now, they will not be able to handle that job if it's suddenly thrust upon them in their teen years.

A short story to give you a piece of what chronically ill children, know from a very young age:

Two years ago we were in our hospital with our then 3 1/2 year old daughter, getting a picc line, and sinus culture for an icky sinus infection that wouldn't go away after 7 rounds of antibiotics, it was supposed to be a three day stay.

My daughter was so medically compliant and verbal, they asked to have their entire medical school class come by to observe her being examined. They split the group into three groups and the first two went off without a hitch.

The third group entered and it was the chief resident leading the group. This one was different than that last one that had led the first two groups. First, he was patronizing her. He was talking in "baby" talk to a chronically ill 3 year old who had likely been through more medical procedures than he had ever been in his life. Second, he was disrespectful to me. He didn't offer a hand shake, or even greet me for that matter. Third, he didn't wash his hands. This is the cardinal sin.

As he approached my daughter with his scope already at his eye, he asked her in baby talk "Can I look at you" he added in her formal name, something she is NEVER called unless she is in trouble, something that is noted in her chart, under preferred name, her nickname is right there.

My medically compliant three year old looked right at him and said "No"

"No?" He asked seemingly shocked, I'm guessing the first doctor had told him how compliant she was.

"NO." She responded

"Why not?" He asked her, the first thing he had done right since walking in the room. He turned to his students as if to show them he was in control of the situation.

"Because you didn't wash your hands" she said handing him antibacterial gel as his entire class laughed" Here, it smells like blueberries" she said with a smirk.

I've never been more proud in my entire life.

Not because she was sassy, which, she was.

Not because, she made him wash his hands, which he did.

I was proud because she took control and made sure he knew she was the boss of her body, and as a chronically ill child she deserved respect. I hope every student in that room will carry that lesson with them for the rest of their career. The day the 3 year old outsmarted the chief resident.

I guess what it really comes down to, I don't care how busy a doctor is, how great they are in their field, or how much they know, when they walk in the room, they need to check their day, their ego and their agenda at the door and take a minute to get to know their patient, and give them an ounce of respect before even attempting an exam.

Good luck to each one of you. I sincerely hope that these letters will be taken with what they are, the experiences of many patients, and caregivers, who took their time to help you become the kind of doctor you are meant to be, the kind of doctors we, and our children need.

As an aside, should you ever want to take a more in depth look at what patients go through, please check out the internet blog world (google blog & the name of a disease), and the world of where patients and caregivers often write with heartfelt emotions on what it feels like to navigate the medical system, to get a devastating diagnosis, and what they’ve learned along the way.

All the Best,

Dayna,, CA

Mom to Charlie, Kate & Tommy

All Primary Immunodeficient and

IVIG dependent

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