Wednesday, January 29, 2014

Pituitary Dwarfism in History

I came across these photos in looking up historical images of Growth Hormone Deficiency. I was trying to see what Mimi might look like if she did not have Growth Hormone treatments, or if they didn't work for her.
Although the term midget is quite frowned upon now, it was the term that was used in the past when someone was a proportionate dwarf. So the term "midget" came up under many of these photos. (it is correct to now refer to a short statured person as a Little Person.)

I thought it was important to show these images, as you can see the similarities in facial features between these people and children now with GHD. Because most children with GHD are treated with growth hormone today, it's hard for me to visualize what an adult with untreated congenital GHD "looks" like.

We aren't sure what the diagnosis of each individual here was. Some may have had thyroid disfunction that led to a stunting of growth. Maybe some had a tumor on the pituitary. Some may have had Laron syndrome or IGFD, some may have a malformed pituitary gland.

Pituitary dwarfs also worked as the munchkins in the Wizard of Oz.

I wonder about the lives of the people pictured, their feelings, and the thoughts of their families as well. How they viewed themselves, what it was like to walk down the street that size, back then, and even how they found their clothing. It is evident to me that many have the cherubic face that Mimi has.

 I love this card, because it shows weights and heights. Something that parents of children with growth disorders always talk about. It would be fascinating to know the actual diagnosis of the person listed, and their caloric intakes in early childhood. One parent on the facebook group I'm on mentioned her daughters doctor said she'd be in the three foot range without treatment. A Laron dwarf today averages four feet tall. These people listed on the card are very small.

Now, before beginning GH treatments, doctors might see if we as parents can try to add height to our children by increasing calories for a few months. That worked for Mimi over the past year. We're not talking huge increases in height. We're talking, "she was barely growing  at all and then we increased her calories by about 500 a day. (putting her at 1700 calories during age 2 to 3). She grew an inch suddenly." Now we're pulling teeth in the growth department again, despite what she eats. Mimi makes barely any growth hormone (averaging 3.4 on two growth hormone stimulation tests.) Now she is gaining weight, but I'm charting the growth, and the little pencil line hasn't moved much.

I wonder if these children could have been a "wee" bit taller with more food, more protein? (Mimi craves a strangely large amount of protein.) I'm talking about maybe being a few inches taller as a result of a ton more food. It  is very intense feeding Mimi 1700 calories a day, and exhausting. Did mothers cook at midnight for these children? Or would that seem odd to them? Did some mothers try it, only to feel that they might be going crazy? Stirring the pot of food on the stove by oil lamp, while their little friend waited for food- everyone else asleep in the house?! As I, in 2012-14 can barely find any information about this at all, those moms certainly didn't read that feeding more could help. It would have had to have been by instinct alone.

Dot Ivenzel here weighs 12 pounds more than Mimi and is three inches taller than Mimi now.

With no chance of a medication to help your child, and no medical information to read...did a mother go mad? I have very strange feelings about Mimi's lack of growth. Initially I felt that all eyes stared at me and wondered if I fed her. (which quite often is what people thought- and I know that because they'd ask me if I fed her! (and glare at me.) Now I go around in a kind of proud haze, sort of self made blinders to the world. Replacing my worries for what other people think with a spacey amazement for her (with gulps of concern for her health and future popping in at times.) Every season I feel like I'm fighting a magnetic pull as I put her clothes away in a bin for next year, instead of giving them to someone else- because her clothes will still fit. It doesn't feel right, but I have to self talk myself and say it's ok. Save them.

Perhaps all the mothers of the people in these photos were stoic creatures who just went with the flow, completely unworried for their Daisy, or Edward, or tiny Sophia. But surely they weren't diagnosed for years (we weren't with the advancements of today). Surely there were comments and teasing, and staring. But surely also, they had brothers and sisters who loved and protected them to pieces.

Even though it's been a long time of wondering what's going on with Mimi, we have it much easier than in the past. I can't stop looking at these adults and thinking of their moms.

Olga Nardone is pictured below, at age 18 during the Wizard of Oz.  She was 40 inches tall and one of the smallest munchkins. She died at 89.

You don't see photos like this online very often. I'm thankful to see them, and I see my daughter and other kids we've met too in these images. xo