Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Wednesday, December 10, 2008

A Medical Degree Grants Neither Empathy Nor Common Sense

What leads certain people to become doctors when they lack the empathy of a reptile and have clearly misplaced the common sense with which they were born?

Eliza has seen more than her fair share of doctors, nurses and therapists and I have been blessed that the overwhelming majority have been kind, compassionate and empathetic. They have rejoiced at Eliza's milestones and progress and have been saddened by her setbacks and trials. In short, they have been humane and are a credit to their professions.

Then there are the minority of doctors who do not fall into the category of kind, compassionate and empathetic. These people need to either leave the pediatrics, move to a lab and do research or leave the profession all together.

As anyone who reads this blog knows, some of Eliza's greatest struggles post NICU have been with sensory processing, feeding and growth. Like the three gifts of the Magi these three "gifts" seem to go together in one neat package. Very simply if you cannot touch the food, you cannot eat the food and you therefore cannot grow at the rate someone at the CDC has decided you should grow at. If you cannot consume food the old fashioned way (say nosh on turkey leg at the holidays) there are a couple of options to get the appropriate calories. One is a g-tube and the other is to increase the caloric intake of the little bit that you do eat. Each choice comes with some good and some bad. For Eliza I have chosen to go the route of increasing the caloric value of that which she does eat. Since Eliza is, for all intents and purposes, on an all liquid diet, this means a very calorically dense formula. Luckily Eliza is able to well tolerate the osmolarity of this formula with no adverse effects to her kidneys. Eliza is not a large child and never will be a large child. Although genetically she should be predisposed to being rather on the tall side, most IUGR ELBW (intra-uterine growth restricted, extremely low birth weight) babies never become the tallest kid in the class. There is nothing wrong with being the smallest kid in the class, if that is what happens.

Which brings me back to the way certain medical professionals treat parents, like me, who have children with fairly significant medical issues. Some of these professionals treat us like unadulterated idiots when in fact it is very likely that we know far more about our child's universe of conditions and issues than they ever will since they are focused on the one organ or system they studied when doing their specialty residency. Let's all just be clear here, while every doctor may have studied a bit of orthopedics in med school, none of us really would see a dermatologist to treat a hip fracture.

As my friend Sarah recently pointed out, doctors, regardless of their specialty, need to understand that they are treating a whole child, not just one organ or just one body system. While I as a parent may not know how to surgically "install" a g-tube, I am very cognizant of the effect that such a procedure would have on the whole child, on my child, not just her gastric system or her place on the all powerful CDC growth chart.

So here are my ten tips of the day to those of you embarking on a career in pediatrics, or a pediatric sub-specialty and to those of you who are already entrenched in your careers:

1. Do not presume that all parents are idiots. Some of us are not only well educated, but because of the extremely fragile nature of our children's health and the failure of the medical community to collectively address the constellation of problems that are often unique to micro preemies, we parents have actually gone out of the way to educate ourselves on our children's various conditions, treatment options and recent research studies into new treatments for that which afflicts our children.

2. Do not presume that we are so emotionally fragile that we cannot bear to hear "bad" news. Absolutely nothing is achieved by failing to tell us the prognosis for our children, the adverse effects of treatments or the simple fact that maybe there is no real treatment for a particular problem.

3. Do not presume that you know what it is like to raise a medically fragile child or a child with multiple delays and disabilities unless you have done it yourself.

4. Do not tell us what we "must" do for our children simply because you can offer no alternative to that which you are accustomed to prescribing. That which you prescribe to treat the organ or system which is your specialty may actually adversely affect the child as a whole.

5. If you have any intention of treating former micro preemies who have spent extended stays in the NICU being subjected to innumerable procedures which are painful yet necessary, please at least read a few articles about the sensory impact that such procedures can have on a neonate later in life. Please remember that if I ripped you from your mother's uterus 4 months too soon, put you on a hard surface under bright lights in a loud environment and proceeded to insert PICC lines, IV's, perform hundreds of heel sticks, touch your gelatinous skin and have your skin break down from such simple human touch, that you might actually have some sensory integration issues.

6. If you don't know the difference between SIDS and SID, you should not be in pediatrics.

7. When you have a pediatric patient with behavioral and sensory processing issues, please do not tell us that "there are places for children like this." In case you hadn't heard, Willowbrook was shut down decades ago.

8. Do not recommend endless tests unless you can identify for us a particular goal for those tests. If you are only ordering more tests simply because you have nothing else to offer us and cannot provide a decent diagnosis or treatment plan for our children, accept our decision to forgo some of these pointless and invasive tests.

9. Please refrain from prescribing medications to our children when there is no realistic means to administer the medication. For example, if a child cannot chew and swallow even one grain of rice, prescribing a tablet for the child to chew and swallow is utterly useless.

10. Try to remember that these are babies and children you are treating. They are not inanimate. They have emotions and probably understand, feel and remember far more than anyone gives credit. They may not look and act like the Gerber baby, but they are our babies and to us they are more beautiful than any other baby on earth.

8 comments:

Cora said...

Amen sister!

Perhaps I should print this and leave it around for some fellows/residents/medical students to read.

wehdostables said...

Wow! Will you go with me to the doctor next week??!!

Anne, Eliza Grace's mom said...

I would be more than happy to go to the doctor with you!

Anne, Eliza Grace's mom said...

Cora,

Have you heard of Project DOCC project? (Delivery of Chronic Care). It is a program some hospitals participate in which tries to educate the residents on dealing with chronically ill children. Here is the link http://www.uhfnyc.org/pubs-stories3220/pubs-stories_list.htm?attrib_id=7687

Should be mandatory.

Sarah said...

Do you mind if I repost or link to this?

Emery's main physician said that pediatrics is nothing more than reassuring the parents - to which I think, some of you doctors just plain suck at reassurance, then. That must've been the one class in medical school that only required a 'D' to pass.

Natalie and Abigail said...

Very diplomatic....:-) I think you will avoid being sued.


Johelen

Robin Elizabeth said...

Very well said! #10 made me teary eyed. I would never do it but would love to anonymously send it to Elizabeth's first GI who I HATED
and is not fit for pediatrics or adult medicine for that matter.

Anonymous said...

Beautifully said!! All people going into the medical field should read this!