When she reaches adolescence
I do have concerns as far as when she reaches adolescence, but my hope is that the approaches that they have today are going to be different ten years from now. I hope that there’ll be some advancement made, but I do believe that Gabriela’s self-image—she’s going to rely a lot on my approach with her and how she’s seen in our household. That’s going to be her first exposure to her self-image, and I really, really believe that my hand in that is going to be very helpful about how she feels about herself… She’s a girl. She’s going to want to wear skirts and bikinis and all that good stuff, and there’s definitely a concern about how she’s going to fare through this emotionally. But, again, I think a lot of it has to do too with the way that we approach the situation.
Mother of Gabriela, toddler, Klippel-Trenaunay syndrome
In the future
In the future, I worry about him playing certain sports or doing some things that other kids do that he thinks he’s ok to do, but I don’t feel like he is. Like the other day, we went to a birthday party, and it was while he was having an episode of cellulitis. They had a see-saw and he got on that see-saw, and my husband and I said “this is going to end badly”, and the other person jumps off and he hits the ground, and he was crying because his leg was so tender from the cellulitis. He doesn’t understand why he just can’t do what everybody else is doing. I worry about him more just because anytime he falls, if he falls on the affected side, then it’s probably going to cause either bleeding or cellulitis, so I just try to, just as much as I can, keep him safe.
Mother of Cooper, child, Klippel-Trenaunay syndrome
Maybe someday she’ll go on and find a cure
Dad: I don’t have any concerns about her future
Mom: Yeah, I mean… later, I think, they’ll hit us more.
Dad: I think that my biggest concern is what she would want to do with her life professionally after schooling and whatnot.
Mom: is she going to have that boy ask her to prom because she’s different? You know, that stuff goes in the back of your head. I know I have a long way to go, but you think of it.
Dad: Right. And is it going to affect anything that she wants to accomplish in her life, going forward. I think I wonder about sometimes, but that’s why we’re very open about it and put a good idea in her mind, a good mindset about this. Sort of stronger for the future.
Mom: Maybe someday she’ll go on and find a cure, you know?
Parents of Erin, child, Klippel-Trenaunay syndrome
We’re going to deal with it as it comes
Socially it is a concern, that goes without saying.–what other kids are going to do or say. Our concern is like playing, how will school or other places be able to handle her if she does have a bleed that ulcerates and that just can’t stop? Because that’s basically what would happen. It doesn’t just stop like a normal nosebleed…
As we’re doing it we’re going to deal with it as it comes. We don’t change her level of activity; if she falls down we don’t pamper her or baby her every time when it happens. We just say, “Is your nose bleeding?” She goes, “Nope!” and peels off. We don’t try to change anything that would be outside of normal, even though there’s a possibility that she might not be able to do a couple things, I don’t know yet. With the propranolol, we have to do monthly checkups on her to check her blood sugar levels and her heart rate and blood pressure, stuff like that. It doesn’t change anything else, I guess. So outside of that, there’s not anything that we do differently.
Father of Charlotte, toddler, Lymphatic malformation and high-flow vascular lesion
To this day don’t have an answer to that
The teasing and the cruelty of other kids, I still to this day don’t have an answer to that, how to work with that…I’m still working on that. With my mom, we’ve sat there and we’ve had discussions about it, but it’s hard. I don’t know what to tell her [as she gets older]. I’m also afraid that when she’s 15, 16, or 17 I’m scared she’s going to come to me and be, like, “Why? Why is it me?” You know how they are, especially teenagers and girls with their self-esteem. That’s one thing I’m definitely afraid of. I don’t really think that far ahead.
Mother of Emma, child, Venous malformation
It just seemed to progress a lot worse than they expected
I think that maybe initially we were frustrated because—it’s not the fault of the doctors or anything, but more so just the nature of the condition that we thought that those initial two sclerotherapies were going to take care of things. Even the doctor thought that he probably would be okay until he hit his teenage years and had a growth spurt and then things would get worse again. But then it just seemed to progress a lot worse than they expected, so that was a little frustrating, knowing that we’re going to have to go through this every couple years, maybe even more frequently. The not really knowing how often he’s going to have this pain and when he does have this pain knowing that surgery is kind of the only way to deal with it.
Mother of Liam, child, Glomuvenous malformation