White coat syndrome
I mean, it’s very helpful when we’re going to the hospital that she’s distracted and they do a good job, and I think this last time, during pre-op was probably her best time. She has what they call “white coat syndrome”; she’s scared of every single doctor. She’s been in the hospital since she was born; she’s been poked at and pricked, so of course she has hesitation around doctors. Distraction is great, but there’s no distracting her after surgery. There’s no distracting her, she’s under anesthesia and she’s very irrational and emotional, and it’s very difficult after the procedure.
Mother of Gabriela, toddler, Klippel-Trenaunay syndrome
When are we going home?
Mom: He remembers some stuff. Like he remembers, he talks about a lot, when him and I used to live in Boston.
Grandmother: He thought that this was his home; he was in here so much. Sometimes when he would go back to our hometown, he would say, “When are we going home?” Because he had been in the hospital so much that he thought that he was only visiting there.
Family of Jack, child, Cutaneovisceral angiomatosis with thrombocytopenia
He literally has grown up here
Mom: Jack is kind of a big personality type of kid, so if I had to have a sick kid, he’s probably the best one that I could have because he charms all of the nurses, gets along with all of the doctors.
Grandmother: He never complained about getting blood tested. Even if he had to have them 3 days in a row.
Mom: Yeah, so I mean he literally has grown up here and has had to deal with medical testing and discomfort. I mean if it hurts, he will cry. I always felt bad for parents who had a 5 or 6 year old that suddenly got sick, but with Jack, this has always been part of his natural, this is who Jack is. Jack always has doctors’ appointments and tests or things that we have to deal with and he just takes it all in stride. So he’s always in a good mood, he’s never in a bad mood and he just kind of rolls with it.
Family of Jack, child, Cutaneovisceral angiomatosis with thrombocytopenia
I’m doing it because I want to help you
[Going to the hospital] has been extremely difficult. The older she gets now, she tolerates a lot more, and you can kind of explain, this is why it has to be done. So she’s getting better, but, yeah, it’s a challenge. With the blood work, you hear her—she doesn’t want any shots. That’s the first thing she asks, and she’ll run the other way. [laughs] … I can’t even tell you how many books we’ve bought and how many videos we’ve bought to explain to her, this is why you’re going and this is why it’s helpful and it’s not like I’m doing it just to torture you. I’m doing it because I want to help you.
Mother of Emma, child, Venous malformation
You’ve always lived this life
She’s never been resistant to coming to the hospital or treatments I think because she’s always—it’s kind of what she’s always been, right? You’ve always lived this life. I think that it might be easier when you’re born with something than for a child who gets ill later on. This is always what she’s known, she’s spent months in the hospital.
Mother of Ashley, teenager, Lymphatic malformation
She got in a routine
The first time she went to the hospital, it did take her a while to kind of settle down and figure out that they were trying to help her. She may be going through something that’s painful, but they were trying to help her. And actually I think going every two months, she got in a routine of ok, this is what we’re going to do. And she was a trooper, she didn’t really freak out, she didn’t really give them problems at all. I don’t think it was until she started getting older and we went longer in between the treatments that we started seeing problems.
Mother of Grace, child, Sinus pericranii