Combined Vascular Malformations
Her veins didn’t form correctly
Her veins didn’t form correctly. I don’t get into too many details because it’s a very convoluted syndrome and I try to speak in very layman’s terms. I don’t want to get into too much detail, again not because I’m concealing something but there’s just so much to say about it. I just chalk it up to, “She has a vascular problem in her leg, and her veins didn’t form correctly.” And that’s it.
Mother of Gabriela, toddler, Klippel-Trenaunay syndrome
It never held her back
I would basically tell people she was born with it, she has a vascular malformation in her leg. My wife doesn’t go into extreme detail, but I do, and I just say it’s something that we deal with. The compression garment keeps the size down, and it’s a continuous—I wouldn’t say battle, but case to improve it, you know? We’re working on it… Some people have more questions, and I think they’re just interested in what it is because it’s not something so common, they don’t see it enough. Some people have asked extra questions and I’ll go into it a little bit deeper with them, and some people are like, “Oh, okay, oh she’s beautiful and she gets around and it doesn’t bother her?” And I said, “No.” It never held her back and she’s the happiest kid in the world.
Father of Erin, child, Klippel-Trenaunay syndrome
You can’t explain it to everybody
I think the first thing is to let people know it’s just something she has, she was born with it. It wasn’t an accident, it wasn’t something that happened, it’s just something she’s born with. And then I talk about how her veins don’t grow quite as normal as they should… That she has swelling because the blood doesn’t get up out of her leg like it does for a normal person, and that can cause the spontaneous bleeding, that can cause pain, and probably does cause pain on a pretty continuous basis. Unless they show a lot of interest, I wouldn’t go farther than that, because when it’s someone so close to you, and affected so much, you can really monopolize the whole exchange….
She walks with a different gait is probably the most noticeable thing, and so people notice. I don’t think Natalie’s really noticed those people yet, that might be more of an issue for me and mom. And you know, they just don’t know. And you can’t explain it to everybody. So I guess I kind of try and ignore it.
Father of Natalie, child, Klippel-Trenaunay syndrome
Call some attention to what’s similar
What I would usually say is she has a syndrome called CLOVES, and only X number of people have it, and that means a lot of big, fancy words but how we describe it is that she has lumps and bumps that grow on her body that come back and her bumps have been a lot around her spine, and so they’ve caused problems with ability and sensation and blah blah blah. And then I’ll say something like, the only treatment right now is surgical, and so that’s why she’s had many surgeries or has a lot of scars… And if it’s a kid, I think there’s an opportunity to be like, “But she also really likes pizza! Do you like pizza?” You know, not to make her the other but also call some attention to what’s similar.
Mother of Riley, child, CLOVES syndrome
As general as I can make it
Most people, if you start talking about all this stuff, they’re going to be, like, “What?” so I just say she has a birthmark, as general as I can make it. If it’s somebody I know, then it’s different, but if it’s just some stranger, I say she was born with this birthmark and she just doesn’t have normal veins. And that’s what Caitlin does, she’ll just say, “It just hurts for me to walk a long way,” rather than to go into a bunch of details that people aren’t going to understand. But if it’s someone that has interest in Caitlin or me, we definitely will tell them more and try to help them understand what’s going on with her. Like her teachers know that she has pain when she walks, and stuff like that.
Mother of Caitlin, pre-teen, Klippel-Trenaunay syndrome
Vascular Malformations
That process is normal because we’re used to it
My wife and I, we usually start off with, “It’s a birthmark.” Then if they say they know somebody that has it, we go and give more information regarding it only because you’re trying to find information about what doctors they’ve been to or what they’ve seen. If they ask us more questions, we just go into descriptions of what she has. We don’t really get into the whole history; we just give a description of what she currently has and what problems might arise, to make people aware. Like she could just be staring at you and the nose would just start bleeding or her lip might ulcerate and start some bleeding. That process is normal because we’re used to it, but it’s not for somebody else. We tell them a little bit, you know, if there’s some bleeding in these two areas, just handle it like a normal bleed and then we’ll go from there.
Father of Charlotte, toddler, Lymphatic malformation and high-flow vascular lesion
A birth defect in his leg
I usually say he has a birth defect in his leg and explain that the veins are kind of like varicose veins where they’re swollen and his entire back of his leg is affected. Sometimes it hurts for him to be touched there, he might not be able to participate or run as fast as the rest of the kids, the affected areas are really sensitive. He’s also not as strong in that leg, so I would have to explain to the school that sometimes he needs a little extra help like getting off the school bus or getting on the school bus, they will help with that sometimes if needed.
Mother of Liam, child, Glomuvenous malformation
I try to find similarities
I think only once or twice that she has had somebody say something to her at school, and she just removes herself from that situation. Usually if she tells them, “This is the way God made me and I had to have surgery,” that’s usually enough for them. Or, “I’ve had a lot of surgeries,” that’s enough for them. I try to find similarities: “she takes dance, and she has dogs and cats like you do!” And I’ll say, “Do you have any brothers and sisters?” They will say yes or no. I’ll say, “She doesn’t have brothers and sisters, she’s an only child. She has dogs and cats, they are her brothers and sisters,” and they all laugh. To try to just open up one of the conversation and make it easier, and let them know, she’s like everyone else, there’s nothing wrong with her. And it’s really done wonders because they are okay with it, they’re like, “Oh I had surgery, I did too.” Or, “I hurt myself too.” So then they find there are common denominators between them and it’s not such a big deal. I do that every class year.
Mother of Annabelle, child, Lymphatic malformation
Developing techniques to answering these questions
Over the years, I’ve developed techniques for answering these questions. I’ll say, “It’s a rare anomaly and he was born with it,” and I noticed most people would not say another word. It was my most successful response. Because the lesion was very protruding and it was very swollen, and it was very blue because the eyeball was much smaller, so the physical appearance was quite shocking to people. So that always made them not say anything, and I liked that because why should I be in the position to really have to explain it to a stranger?
Mother of Steve, teenager, Lymphatic malformation
She tells them it’s her special birthmark
For the most part if we’re out and about, people obviously notice that Grace has a mark on her face and she’s at the age now where if someone asks, she tells them it’s her special birthmark. If we don’t know the person well, we don’t go into the long spiel of what it is, we just kind of tell people it’s her special birthmark. And she tells people she was born with it. But it is kind of difficult to explain to people, even your friends or family, without going into the whole process.
[Later] We explain to people that she was born with an abnormal connection between the blood vessels on the outside of her brain and the inside of her brain. . She also has a small formation in her brain that they can’t really treat because it’s part of the main drainage system of her brain so she just gets yearly MRIs to monitor that. She still has a small chance of having a brain bleed because of that but they have never actually seen something like that in the brain before so they don’t really know what could happen. We’re finding that we have to explain it a little more now that she’s starting kindergarten next year and kind of have to get into more details with people, explain more of what could happen. People have to watch her for brain bleeds and we have to give them the symptoms to watch for, and what to do.
Mother of Grace, child, Sinus pericranii
Vascular Tumors
I usually don’t even say hemangioma
I say it’s a hemangioma, I say it’s a birthmark too. Originally I said it would eventually go away, now since I know that it’s not anymore, I just say it’s a birthmark, but that’s all I say. I usually don’t even say hemangioma because I don’t feel like explaining that…
You know, parents always go, “Oh did she fall?” It looks like she scraped her face so that’s pretty much what we get, no one stares. Little kids will notice, they’re the ones that notice it the most I think, more than parents do actually. But it’s on the side of her face, so it’s not that noticeable.
Mother of Anne, child, Infantile hemangioma, PHACES association
I’ve had a hard time describing it (Explaining it to others)
Whenever anyone has asked me to describe it, I’ve had a hard time describing it. I’ve been told hemangiomas are vascular tumors, but that doesn’t mean they’re cancer.
[Later] I’ve had to explain it for a long time. I’d say not as much now, but even last year people would talk about it and make comments about it and ask about it, so yeah, definitely something we had to explain. And I still fumble over my words trying to describe how they described it to me. I can picture it, what it looks like, but it is hard to describe.
Mother of Melissa, child, Reticular hemangioma
You’re just a parent trying to do the best you can
I would say he had a birthmark which we called a hemangioma. Because of the size of his hemangioma, it produced a huge amount of blood flow, 11 liters versus 2 for an infant that age, which caused chronic heart failure and we just went from there. I guess I would rather he talked about it than me but when I would tell other people, that’s what I would say. When talking with other parents I will typically say he’s had a significant number of surgeries. Parents especially can relate with that, and then if you tell them how many, they can’t relate with it anymore, it actually makes them uncomfortable. For a long time I felt very different, in getting to know people (in adult relationships). Then I finally realized, we weren’t that different, I mean you’re just a parent trying to do the best you can just like every other parent.
Mother of Joe, pre-teen, Reticular hemangioma