That leg was so much bigger on one side
Even things as simple as clothing, trying to find clothes to fit. That leg was so much bigger on one side, and so we’d have to buy stuff a couple of sizes bigger, and hem them so that they were short enough for him. I’ve even had to have some pants made for him, because that leg is longer, so the pant legs are different lengths, but there was just such a big difference in the size. It wasn’t so much at birth that I remember it being so drastic, but as he started growing, then we noticed it more. … He didn’t walk until he was two, so for two years we didn’t have an issue with the shoes or anything, but now he has to have a lift on his left side, because he was having a lot of pain at night, he would wake up crying. The doctors just figured that possibly it was pain, because he was so out of line because that leg was so much longer. He was crooked as he was walking, so once we got the lift for his shoe, he doesn’t wake up at night crying like he did, so that’s made a big difference… Since they’ve done these surgeries, his legs are closer to the same size. There’s still a big difference, but they’re close enough that you’t can notice as long as it’s not a real narrow pant. He can wear most clothes regular size, or maybe one size up, because of the amount of tissue that the doctor removed.
Mother of Cooper, child, Klippel-Trenaunay syndrome
You’re constantly buying two pairs of shoes
Dad: Before the second debulking on the calf area, my wife really had a hard time trying to find clothing to fit on. We also had issues with shoes, because her left side takes a really wide shoe and a different size than the right, so you’re constantly buying two pair of shoes, two different sizes. Our doctor recommended Nordstrom’s to us because Nordstrom’s will sell you two different size shoes for the same price, so that was good information from them also. It got to be a little difficult, and then once she had the debulking surgery on the calf area it made pants a little bit better, but there are some things that she does struggle with, especially being a girl. Boys are jeans and t-shirts and sneakers, but little girls like to dress up and have the patent leather shoes and whatnot, and I think that’s where we see the frustration the most.
Mom: Because she still wears the dresses and the bow, but to get the shoes to go on her feet, it’s a challenge for us.
Dad: Another thing too is we don’t try to hide what she has.
Mom: She wears skirts and dresses every day almost.
Dad: If she wants to wear a dress or skirt or whatever like all the other kids, she wears the same exact clothes. We try not to mask it at all because that’s not healthy either.
Parents of Erin, child, Klippel-Trenaunay syndrome
We go to a real shoe store
Dad: We don’t go to your average Foot Locker, we go to a real shoe store. There’s a gentleman here at home, and we’ve been going to him for a little while. He understands her case, so he’ll recommend a softer sole and the guy is excellent because he lets Erin pick up her shoes and then he’ll go, “I’m going to take my picks off the shelf, let’s see whose feels better,” and he takes into consideration of the size and how she needs a softer shoe versus a stiffer shoe and whatnot and we only have to buy one pair with them. So it took us a little while to shop around and try to find the right person.
Mom: The sneakers are not an issue, it’s the dress shoes to stay on her foot. And we’re having issues, but…
Dad: She doesn’t have the back of a heel like you and I would where the back of your shoe can latch on. It’s kind of flat so she doesn’t have a heel to hold the shoe on sometimes, and that’s a little complicated.
Mom: Or something on the top of her foot where she couldn’t get her patent leather shoe on, too tight.
Dad: But other than that, I think we’ve dealt with it, managed it pretty well.
Parents of Erin, child, Klippel-Trenaunay syndrome
She couldn’t wear shoes
Mom: When she started walking, I mean before she had the debulking surgery when she was 3, she couldn’t wear shoes. I mean, the shoes that they had to make for her were like, these huge Eskimo-looking shoes. She would not have been able to wear pants; that would have been a very big issue.
[Later]
Caitlin: The jeans that I buy, I have to try them on just to make sure they’re loose enough. If they’re too tight, I can’t wear them because it’s hard to get them on. I have to wear wide shoes because my left foot is still a little bit big.
Mom: As she gets older, though, it’s been easier to find them because there are wider widths in adult-size shoes. But both shoes are different; the one foot is more like a normal width, the other one she needs like a double E width, and she can only wear tennis shoes like New Balance. We can buy normal brands, we don’t have to have them custom-made anymore so, but it is an extreme challenge to find—I know we’re always looking.
Caitlin: I can’t dry my jeans and my pants because then they shrink a little bit every time, so I have to hang them up, I can’t dry my jeans and stuff.
Caitlin, pre-teen, and mother, Klippel-Trenaunay syndrome