Out of the Mouth of Babes: A Child’s Perspective on Congenital Hypothyroidism

That’s me with my oldest at Disney when he was 3 years old and then again just recently.  He’s 7 now.  Those 4 years certainly flew by – way faster than he drove me around that race track a few weeks ago.  He’s turned into quite the amazing kid – wise beyond his years.  I recently interviewed him about what it’s like to have congenital hypothyroidism and here’s what he had to say:

What does congenital hypothyroidism mean?

It means that your thyroid doesn’t work that well.  You don’t want to have it.  You have to take a pill every morning.

Where is your thyroid? 

In your throat and it’s shaped like a butterfly.

How did you learn to take a pill? 

My wonderful mom and dad just told me I had to.  I said I don’t want to take this and my parents said I had to or I would die.  So, I learned how to do it.

Um, did we really tell you that you would die if you didn’t take your pill? 

No. (sheepish grin) I did learn how to swallow the pill, though. I just figured it out.

Do you know anyone else with congenital hypothyroidism? 

Yes, my brother.  My mom and my dad have thyroid problems too.

What is the worst thing about having congenital hypothyroidism? 

You have to wait at least 30 minutes after you take your pill to eat breakfast.  Sometimes that’s really hard.

What’s the best about having congenital hypothyroidism?  

That it makes you really unique.

What do you tell your brother about hypothyroidism? How do you help him?   

I say it’s okay, I will help you.  Sometimes I can get him to swallow his pill and not chew it.

What about the blood draws? 

Blood draws are fine.  But I would suggest you let your kid sit in your lap in the chair, so they don’t scream because that makes the blood come out slower.  I try to think of things that make me happy.  If there’s a clock, I usually look at it.

What about your appointments with your endocrinologist? 

They are pretty good.  They are not scary, but sometimes they do things that tickle.  They are totally fine.  They do everything right. They interview parents about are we having any problems.

Is there anything that scares you about hypothyroidism? 

Yes.  Sometimes you don’t know what’s going on with your body.  Sometimes you don’t feel like yourself.

What do you do when you don’t feel like yourself?

Sometimes I tell you guys that I feel off.  Sometimes I just remind myself that we are all different.

What would you tell other parents who just found out that their child has congenital hypothyroidism? 

Just calm down and relax.  Tell your kids that they will be okay.  Tell your kids you will help them get better and that there is a kind of medicine you can take to get better.

What about kids who just found out they have hypothyroidism?  What would you tell them? 

They should call me, and I can explain it to them.  I can tell them how I feel.

How do you feel? 

I feel good, because my family is very unique.

Is there anything else you want people to know about this – about hypothyroidism? 

Calm down.

Why do people need to calm down? 

So they don’t overreact and get more sick and have more of a problem.

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I am so grateful to my sweet boy for sharing his thoughts.  I was most surprised (and pleased) to hear that having congenital hypothyroidism makes him feel unique.  I was impressed by all the advice he gave, particularly that screaming during blood draws makes the blood come out slower (wonder if that’s really true?) and that we all just need to relax and stay calm.  I was saddened to hear him talk about feeling off, but glad that he has learned to recognize and articulate that feeling.  I hate that he hates taking a pill every day – that’s something I wasn’t as aware of because his younger brother is usually more vocal about his disdain for the daily meds. In general, though, his overall perspective is that this really isn’t that bad and it isn’t anything to stress out about.  Parents of infants with congenital hypothyroidism, I hope this gives you some perspective.  It definitely gets easier and it becomes part of their daily lives. I believe it makes them better advocates for themselves, because they learn so much earlier to listen to their bodies and to take an active role in their own health.

Adults with thyroid problems – sounds like we just need to calm down and don’t overreact – don’t want to end up with more of a problem!!  😀

For more resources for children, check out my Thyroid Kids Zone.

-By Blythe Clifford aka Thyroid Mom