The most problems with the bleeding when he started crawling
We started having the most problems with the bleeding when he started crawling. Once he was mobile, he would just bump things. That purple area, the vascular part, when you bump those spots they would bleed, and so we went to the doctor. At this point, the doctor has removed probably over 75% of that vascular part that would bleed. Now occasionally Cooper has a bleed, but there’s not much left to that purple area, the bumpy vesicles that bleed, so we don’t have nearly the bleeding issue that we did before the surgery.
Mother of Cooper, child, Klippel-Trenaunay syndrome
It is the scariest thing
We’ve got pads and as far as where we change his diaper, I would always have to have pads under him, like the throwaway kind, so if he started bleeding we could get him to the bathroom or wherever so we wouldn’t get blood everywhere. One morning, I went in his room and his bed was just covered in blood, all the sheets and blankets and everything around his bed just covered in blood. He just bumped something during the night and just bled. I mean, it’s the scariest feeling to walk in and see your child covered in blood, but you know he was fine, it’s just the blood looks like it’s a whole lot more than it actually is.
Mother of Cooper, child, Klippel-Trenaunay syndrome
It’s such a scary feeling the first time
The first time he bled, oh my goodness, it was just so scary. It was funny because he didn’t go to day care; this is his first time to start day care this year, nearly four. I thought I had prepared them and I told them what they could possibly expect, and they had some stuff, stalls, pad things to put pressure on it, but they just weren’t expecting it I guess. The first time he bled just a little bit, they were so shocked that they called me, and I was like “I’m on my way, I’m almost there” and by the time I got there it had quit bleeding, but it’s just such a scary feeling the first time. I remember my baby sitter, having to tell her what to do. Here are all the supplies, so if it happens right here you just grab this, put pressure on it, and usually it stops pretty soon, but I have had times that it was hours before it would actually stop bleeding. I could take the pad and keep pressure on it, hold it tight so that it would stop bleeding, and sometimes it would stop quickly and we wouldn’t have to keep it on, but then a lot of times we’d have to leave the bandages wrapped on for hours to get it to stop bleeding.
Mother of Cooper, child, Klippel-Trenaunay syndrome
We went through a lot of Band-Aids
We found ways to bandage her and keep her bleeding somewhat controlled. We went through a lot of Band-Aids, a lot of bandages trying to control it. And at that time she wasn’t able to monitor herself at all, so sometimes she’d be playing somewhere and you’d come check on her and she was already sitting in a pool of blood and you’d only been there 2 minutes ago. You work real hard on watching her. Once the bleeding starts it’s basic first aid, you apply pressure and elevate the legs and then you bandage it up. For a long time it was daily baths to try and keep the areas as clean as possible. … She’s also had several procedures to help cut down on the areas of active bleeding. One is, sclerotherapy, where they inject medication into the bleeding vesicles to scar them out and block them off. And then in the last year, she’s started having lasering which has done a huge, a huge amount to decrease the bleeding. Not gone, but it’s much, much less and frequent.
Father of Natalie, child, Klippel-Trenaunay syndrome
Sometimes you go through multiple pairs of clothes
Another thing is she’s always got to be aware; if she has a bleed at school, she can go to the nurse’s office or she can go to a bathroom that has some stuff in it, some bandages and some Band-Aids for her to use, but if she can’t take care of herself, she can go there. That also means that sometimes you go through multiple pairs of clothes during that relatively short period of time, because that bleeding starts and by the time you catch it, it has bled through not only her tights, but through her jeans or her pants.
Father of Natalie, child, Klippel-Trenaunay syndrome
She still has the bleeding but nothing crazy
The big change was last year. She had a really crazy bleed last year after she had an embolization. We then changed over and used a drug, propranolol, to help slow the flow of blood. It helped out tremendously. In the past year, she still has the bleeding but nothing crazy, it’s manageable. If anybody had like a dry air nosebleed or something like that, it’d be about that equivalent. It’s usually you know twice a month, but manageable when there’s no other drastic treatment that would be necessary.
Father of Charlotte, toddler, Lymphatic malformation and high-flow vascular lesion
My daughter didn’t think anything of it
My wife was super nervous; I was more like the calming effect for my daughter. When the bleeding happens, you just think “Okay, she has this condition, it’s going to bleed, do what the doctors tell us.” For me, it was just an order of operations: Ok she bled, take pictures, clean her up, send them to the hospital, do all the stuff until they say, “Okay this is what we’re going to do.” My wife and my mother-in-law were living with me; they would freak out every time with the bleeding. My daughter wouldn’t let us help her clean her up; she was just acting like a little kid would, “Leave me alone, I’m fine.” My daughter didn’t think anything of it. Amazingly now she goes, “okay, now I’m bleeding,” like it’s no big deal. Now the roles kind of reversed a little bit in the last year; where she’s more calm and I’m more a little bit on edge about it.
Father of Charlotte, toddler, Lymphatic malformation and high-flow vascular lesion