He doesn’t know that there’s anything wrong
It doesn’t faze him. He doesn’t know that there’s anything wrong, so we don’t talk about it a lot. When we started the daycare, of course the kids asked him questions and he just told them he had a boo boo and that was the end of it, he’s still too little to be really self-conscious or anything, We don’t really talk about it, it’s just sometimes something’s hurting, we try to make him feel better, and I guess that’s the only time we really have any conversation about it, just those situations… I’m sure we will discuss it with him as he gets older, because there’s going to be other surgeries that he can have that’ll make a bigger difference, and make that side look more like the left side. I’m sure kids are going to, not necessarily tease him, but they’re going to have questions and say things that might make him feel bad, so I’m sure he’s going to want to know what’s wrong and why, and of course we have no idea why. I feel like he’ll want to have more surgeries later on since the surgeon has said that there’s more he can do.
Mother of Cooper, child, Klippel-Trenaunay syndrome
Everybody’s born differently
Dad: She knows that there’s something wrong, and we explained to her that everybody’s born differently. Some people have different color hair, different color eyes, some people have trouble seeing; everybody has their own unique personality trait.
Mom: She gets frustrated, like this morning she got frustrated and said she hated her leg, but then she was okay afterwards. It’s hard because she’s getting older now, now the questions are coming even more. It’s a lot easier too because she was born with it, that makes it easier.
Dad: Another thing too is she has a good mind about it. In the summertime she wears shorts and she’s got a stocking on one leg and her leg is a little bit larger than her other one, of course kids are going to look at her differently or ask her questions. I’ll be honest with you, one thing I’m very proud about her is she just says, “It’s my bad leg, I was born with it,” and she moves on. She doesn’t let it even affect her. So I think talking about it and keeping the communication between you and your child is very important.
Parents of Erin, child, Klippel-Trenaunay syndrome
She knows she has birthmarks
She doesn’t really know about [the hemangiomas] in her throat because we haven’t gotten there, but she knows she has birthmarks, we call them. And she knows that she’s going to go take a nap in a bed and they’re going to help make them better kind of thing. That’s as far as we go because we don’t really talk about it too much or she will be afraid to go when she gets there. She’s still so young, you know.
Mother of Anne, child, Infantile hemangioma, PHACES association
She hasn’t asked why yet
Gabriela’s still little so there’s just so much that she can comprehend. She does know now that her leg is bigger, and she does refer to it as her bigger leg. She hasn’t asked why yet; we’re not there yet as far as her cognitive development. I think it’s because she goes to pre-K, I think that there are some kids there who’ve probably referred to her leg as a bigger leg, and that’s fine because it is bigger. Like for example, we refer to her sock as the Magic Sock, and she’s asking why it’s the Magic Sock, and I said because it does magic things to your leg. Our topics right now are just very rudimentary and very surface, and I’m sure that of course throughout her life, she’s going to become more inquisitive about her condition, and I think that we’re prepared to talk to her about it. We’ve expressed to her that everybody is different, that whole talk, that whole emotional talk, so I think that we’re faring well thus far.
Mother of Gabriela, toddler, Klippel-Trenaunay syndrome
Now you’re dealing with a whole different sets of emotions
Now, because she’s getting older, she’s starting to vocalize her displeasure in the appearance of it. So now you’re dealing with a whole different sets of emotions because now she’s able to tell you what’s bothering her, if it hurts, or when it does bleed, or “I don’t like it” or when people say “Hey dad, why do they always look at me.” So now we’re dealing with a different aspect of what she’s dealing with, and we found doctors here to help make managing her a lot easier instead of having to go back and forth.
Father of Charlotte, toddler, Lymphatic malformation and high-flow vascular lesion
He has a good knowledge of his situation
He has a good knowledge of his situation because I taught him to ask questions and I talk to him about his case, I had to. The doctors said, “You have to talk to him and let him know what’s going on.” I mean, not maybe in every detail, but I told him that, “You have this case and we don’t know why it happened to you only, maybe you were special to God,” that’s what I told him. He asks doctors, he asks a lot of questions, and I taught him to ask, and every time they say something, he wants to understand, I explain it to him. I let him know what’s going on. “Yes, you are going to surgery, yes, they’re going to cut this bump. We just have to do it because if we don’t do it, it can grow or it can bleed. You’re going to end up anyway in the hospital.” So he has a good knowledge of his situation.
Mother of Sammy, pre-teen, Venous malformation
We haven’t told her the extent of it yet
To be honest we don’t talk about it too much with her. I mean we talk about, [but] we haven’t really told her the extent of it yet. I was actually looking at a friend’s Care Page the other day and I thought to myself, “Should I show her her Care Page?” because she’s never seen it before. We took pictures when she was in the hospital and doing the procedures, and we’ve never really showed her those and we’ve actually been thinking recently, maybe we should. When people ask her about the mark on her face and we just say it’s her special birthmark, she seems to be appeased with that at the moment but we’ve been thinking lately about explaining it to her, but it’s hard. I tell adults about it and they can’t really understand it so I’m not sure how I’d be able to tell someone her age about it so she’d understand. That’s probably the main reason we haven’t really gone completely into it yet, just because it’s very complex and I’m not sure how she’d really be able to understand exactly what’s going on.
Mother of Grace, child, Sinus pericranii