So you’re saying I don’t count?

I was taking a survey over the weekend – no, not one of those answer three questions and win a free iPad! surveys – but a survey from a major national polling company. You’ll see them on the evening news occasionally.  Everything was going smoothly until I got to this question:

Do you have any of the following health concerns? (Please check all that apply)


Multiple Sclerosis

High Blood Pressure

High Cholesterol






Tourette Syndrome


Cystic Fibrosis


Parkinson’s disease


Growth Hormone Deficiency


Muscular Dystrophy

ALS (Amyotrophic Lateral Sclerosis) also known as Lou Gehrig’s Disease

Erectile Dysfunction




Noise Induced Deafness

Hearing Impaired


Bipolar Disorder


Irritable Bowel Syndrome

Lactose Intolerant

Other (Specify:)


Refuse to Answer

So naturally, I check OTHER and type in Congenital Heart Defect. The survey form is not impressed:

ERROR: Cannot find variable:TEXT__Q6005_AE
Please change your answer.

So I try again, with Congenital Heart Disease.

ERROR: Cannot find variable:TEXT__Q6005_AE
Please change your answer.

Uh-huh… Mr. Computer, I’d love to change my answer, but that is just not possible!

Try again: Tricuspid Atresia

ERROR: Cannot find variable:TEXT__Q6005_AE
Please change your answer.

What was probably happening was that question was a “branch question”… the survey form is programmed to ask additional questions based on your answer. But it was disheartening to find that the database didn’t even recognize America’s leading birth defect. Shoot, most of the Acquired Heart Diseases are left out, too. The only thing that qualifies is high blood pressure. (That’s a good hint that this is a branch question – answer high blood pressure and the next question probably will be about the medications you are taking for it.)

In the end, I chose refused to answer since I do have a pretty serious health concern but it is not on their list. The next to the last question was Can you think of any way we can improve this survey?

Why yes, now that you’ve asked…..!


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4 Responses to “So you’re saying I don’t count?”

  1. Jill Haskins Says:

    I bet you let that computer have it didn’t you?! You told them how it really was! Go steve!!!! :o)

  2. L Goldenschue Says:

    I totally understand. I have a Medic Alert card and I don’t think we are even on there either. Had to find something that would work.

    How about going into an ER and they have no clue. I’d love to tell you about the experience I had going into Congestive Heart Failure (I didn’t have a clue what was going on) in Cody, WY. I’ve never seen a doctor so terrified. Finally he had the sense enough to look through my stuff and found the number to my husband and to my pediatric cardiologist. After everything got settled down and they had now transferred me to another hosptial (that also had not a clue about me) I informed the cardiologist in training that they might want to consider going into adult congenital heart specialty. They looked at me like – HUH? So I took the time to explain myself.

  3. Amanda Says:

    We had a member take her HRH kids to the ER and the doc (honest to God) told her there was no such thing – did she mean HLHS? Tricuspi Atresia maybe . . . What’s that?

    Oh, only the reason the Fontan procedure was INVENTED . . . and yes this man had an MD. Actually so did the stand in OB/GYN who told me Liam’s neonatal heart couldn’t be as small as a strawberry/golf ball until I revealed my source was the illustrious Dr. Starnes, at which point my doc said, “Well I guess I’m not a pediatric cardiologist” – burn!

    Oh, we have so far to go . . .

  4. Jamie Says:

    One of my biggest complaints has always been why the American Heart Association ALWAYS talks about heart attack & stroke being the #1 & # 3 killer of Americans. It’s in all of their printed promotional material, especially when advertising their Annual Heart Walks. Why do they fail to mention that heart defects are the #1 killer of our babies? (I won’t go into why I actually think this is because it involves politics and pharm. companies!) You would think that from a marketing perspective that they would take that information and run with it. People tend to give more to organizations that affect children. It has irritated me since our first heart walk years ago & I have discussed this with regional directors, sent emails, with absolutely ZERO response. Our regional director understands my complaint and has done everything within her means and authority to help out our kids. My son was the Grand Marshall of the heart walk one year and she has allowed us to take donations at various community events that benefits the AHA. And that’s as much as she can do on a local level.

    I think there is an uprising in the CHD community about why people, doctors, organizations don’t know ANYTHING about CHDs. There’s so many parents fed up and pissed off with the fact that there is so little information out there. When my son was born, only 7 years ago, there was hardly ANYTHING online. But I look at where we are now & all the fabulous organizations and the parents coming together and who knows what can be accomplished. Especially with all the folks that lobby for us in our government like Steve! I think the most important thing is to just talk to who will listen and try not to get too irritated with uneducated people, even if it’s an MD. Keep On Keepin’ On!

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