Tuesday, September 30, 2008

Kennedy-Brownback, Disability and Degree of Difficulty

The Kennedy-Brownback Bill was passed by Congress this past week. This bill requires accurate, up-to-date information about disabilities be given to parents when they receive a pre-natal disability diagnosis. I am glad to hear Congress say that unbiased information matters.

As a nurse, I often find the medical responses to disability the hardest to stomach. Folks in my field should lead the way in ‘knowing better than that.’ It is just mortifying how often they don’t.

A couple of weeks ago it was an MD from Canada talking negatively about Down syndrome.

Then this was in an article in The Chicago Tribune this week:

“Dr. Jacques Abramowicz, co-director of fetal and neonatal medicine at Rush University Medical Center, cautioned against providing a picture of the disorder that is "too rosy."

"Whenever something like this (Down syndrome) is in the media, there is the tendency to make it appear much more beautiful than it is in reality," Abramowicz said.

He says he doesn't tell women what to do, but he stressed that it is a doctor's responsibility to convey the serious health problems that accompany Down syndrome, including higher risks for leukemia, thyroid problems and, later in life, dementia.

"It is extremely difficult to have a baby with Down syndrome," he said.”

Well, this sticks in my craw.

I hope he feels equally responsible to tell parents that people with Down syndrome have a decreased risk of solid tissue tumors like breast cancer, and that ‘thyroid problems’ are experienced by a huge number of people without Down syndrome also (women over 40, for example) and they’re usually pretty easily treated. And I hope that he is sharing that the information about dementia is a risk factor, not a foregone conclusion.

(Like maternal age increases the risk of Down syndrome—yet 60% of all babies with Down syndrome are born to mothers under 30 years old. Maternal age is a risk factor, not an absolute.

The same is true of dementia. There is a higher risk of dementia, but most people with Down syndrome don’t show signs of dementia.

A physician in my area that works with adults with developmental disabilities says that most aging people with Down syndrome who are given a dementia label are misdiagnosed. He evaluates the folks that come to him and “cures” most of their dementia by treating their underlying hypothyroidism, depression, sensory deficits and other issues. He feels that most folks jump to a dementia diagnosis wrongly, and that this is inflating the current statistics.)

Is this doctor telling parents that the existence of Down syndrome is teaching researchers a great deal about Alzheimer’s disease? And that in 40-50 years, when their kids are getting up in age, there will likely be new information and new treatments available for dementia—for all of us?

Is he telling his patients about the advances in medicine, in education and in society that are making life with Down syndrome better than it has ever been? Is he telling them that quality of life of even the ‘lowest functioning’ individuals is better than it has ever been—they live home, they go to school and interact in their communities like never before? Is he telling them that the next 30 years are likely to bring about even more advances?

The studies say that few physicians are. Informed choice requires up-to-date information and includes accurate information about positives as well as accurate information about difficulties.

I hope that physicians aren’t sharing this information because they don’t know it.

Now, let's talk about "difficulty."

The doctor said, “It is very difficult to have a child with Down syndrome.”

These statements always bug me.

First, I always want to ask how he would know that—is he surmising? He’s a neonatologist—has he seen a lot of families raise their kids with Down syndrome? Maybe he has, but if his experience is just with newborns—newborns under duress—is it possible he’s extrapolating a bit? How far from infancy are these extrapolations accurate, do you think?

Then, I wonder, are professionals really implying that if you don’t have a child with Down syndrome your life as a parent will be easy??


Not all kids with Down syndrome are that difficult.

And lots of kids without any diagnosis at all are incredibly difficult to parent. All the bad things you read about in the papers are perpetrated by people. All of those people have parents, and few of those people have a diagnosis of Down syndrome.

I’m just sayin’…

Beyond this, many things in life are difficult. Difficulty gets presented like an important reason to avoid something, yet people routinely choose to do really difficult things and think they are better off because they do.

Running marathons, for example, (finally, a reason for that picture!) is difficult. You have to run—a lot. You have to train incessantly—carving time out of your busy life. You have to sweat. You wear out shoes. You risk injury. Even without injury, you tolerate a ton of discomfort (some might call it pain) as well as boredom, exhaustion, bad smells and bad weather.

It is stressful, even grueling at times. Yet people do it.

There are lots of stories after every marathon about people who hurt themselves and keep running or who stay in the race even though they will finish hours after everyone else has gone home. Yet marathon-running is a respected choice.

Becoming a physician is also difficult. One must graduate from high school with excellent grades, graduate from college with excellent grades, graduate from medical school with excellent grades, be a resident forever—balancing hard work, terrible hours, and classes where you must have—of course—excellent grades.

It’s stressful, even grueling at times. Yet people do it.

They juggle young families so they can finish. They spend every cent their parents ever made and get loans up to their eyeballs. They give up sleep and hobbies and reading the newspaper—for years. It’s a struggle—a highly respected struggle.

People willingly take on huge challenges and would fight you tooth and nail if you tried to stop them.


Because it’s worth it.

The reward is worth the effort. In fact, the struggles make the rewards worth having. Rising above the odds and mastering the challenges is empowering—and fun. It makes us SOMEBODY in our own eyes—and sometimes in others’ as well.

So we choose challenges for ourselves and recommend against them for others? This is disingenuous at best—elitist at worst.

And when we talk to someone about what it’s like to be a runner or a doctor what do they say? If they tell us they love it because of the rewards they are experiencing (good health, winning, prestige, making a difference, saving lives, etc) do we accuse them of painting a rosier picture than they should?

Do we caution others not to listen because they are making running or medicine appear more beautiful than it is?

Um, no. We never do this. Not ever.

So, why would we respond to parents of kids with disabilities this way?

I wonder….

For my other posts about Down syndrome click here.

Photograph courtesy of Philip Greenspun


Penny L. Richards said...

Every expectant parent should expect EVERY child to be more complicated than they look on TV. Kids never stay little and cute; not one single baby comes with a warranty against disease, accident, or surliness. Parenthood isn't a 24/7 sitcom, but it's not an unending Greek tragedy either. It's just... life.

I'd want everyone to anticipate parenthood more realistically, not just those anticipating a kid with a specific diagnosis.

Terri said...

You are so right!! I couldn't agree more.

Ashley's Mom said...

My experience so often is that doctors really have no idea what it is like to parent a child with disabilities, especially a child with significant disabilities. When they try to tell me what my life will be like, I just smile politely and then laugh at them behind their back :)

Trish @ Another Piece of the Puzzle said...

So well said. Because is life about everything being easy?? Why have we become so obsessed with happiness and ease? Why do we value our own lives above the lives of our unborn children?

rickismom said...

Yes, the "cure-all" society looks for whats easy. But my grey hairs are not from Ricki, but her teenage brothers!!!