I think that you need to reach out to people that are within this situation that have experienced this, that could speak to you person to person, mother to mother, not just speaking with a physician. I think you need to speak to people who are going through this real-life situation, and I think you need to just educate yourself as much as much as possible on the topic. Even with speaking with the doctors, you have to educate yourself, because I know, certainly, I’ve asked the doctors questions, and they’ve said, “Well, that’s a good question,” because they didn’t address it with me, so my husband and I have really educated ourselves on the topic. Just to be equipped to understand and to ask.
Mother of Gabriela, toddler, Klippel-Trenaunay syndrome
Swimming helps KTS
Mom: Swimming helps KTS.
Dad: That was another thing for activities for us, we’ve noticed that swimming is like, the key thing for her because I think the water pressure on her leg makes it feel better, and plus it’s really good exercise for muscle tone in that leg.
Mom: Because she had issues with her foot back maybe a year ago. Her footwas turning, and she wasn’t walking flat-footed, so she had to go to physical therapy to move her leg and bend her leg and her foot. We always had a pool anyway, she was always a good swimmer, and we didn’t go to therapy for a little while, and she went swimming in the pool. She actually straightened out her leg on her own by swimming, by moving her leg up and down, her foot. So then I took her to her orthopedist and he couldn’t believe the progress she had by swimming.
Dad: Just by kicking when you’re swimming was basically building up the muscle tissue in the back of her ankleand it basically made her foot straighten out. So in the summertime, she’s in the pool every single day. You cannot get her out of the pool.
Mom: Her doctor even said, he goes “most cases of KTS you’ll see they actually become swimmers.”
Parents of Erin, child, Klippel-Trenaunay syndrome
Focus more on the positive than the negative
I think that for parents, one of the best things we can do is just make sure we continue to focus on things that are positive and the things that are working well, and that we just have to get through the things that are difficult….it’ll all work out the way it’s supposed to. We really focus more on the positive than the negative because it’s a blessing, you know. I can’t ever remember not thinking that it was going to be okay, and my husband was the same way. I think that we just always felt like there was something there…that we knew it was all supposed to be the way it was and that everything was happening for a reason. Joe’s path is a little bit more challenging than most kids his age. He has more to think about than most kids his age, but he does great, he is just able to do anything that needs to be done. But I don’t know. I really don’t. I’m not sure. I would hope that other parents that might find themselves in a similar situation were ready because there’s a lot, I don’t know if that’s the right thing to say to anybody, you know? We really thought we’d be done with everything that was medical by the time he was two, I mean, that was my whole vision in my head. It was hard to get over that, but once you’re over that, you’re okay.
Mother of Joe, pre-teen, Reticular hemangioma
Just take it in stride
It depends on the personality and the attitude of the person. I would sit there and just take it in stride. Be at the mercy of what everybody tells you until you figure out a plan. The biggest thing is have a plan, look around, always do your due diligence. Exhaust everything that you know locally or wherever you need to go to find the right information, the people that you need to get ahold of. You need some manageable care where you reside at, and being able to find the right people that can help within that region.
Father of Charlotte, toddler, Lymphatic malformation and high-flow vascular lesion
Keeping the normalcy as much as possible
Don’t go on the internet! Don’t google it! Speak with the experts and get your information there. Ask for a more coordinated message. That’s something I wish I had done, I wish I had spoken up then and said, “You know what? This is all so confusing could you please come up with a message that I can understand so that my mind’s not going in different ways?” Find a good pediatrician that you’re comfortable with and join the support networks where you can, if you’re up to it. I can see a lot of people finding it overwhelming, so I’d say check them out and don’t feel at all guilty to find that it’s not for you during the pregnancy time, and that you wait until afterwards. And then I’d say, lastly, even though you’re pregnant and you find out this horrible news all of a sudden, there’s still a positive, you’re still having a baby and it’s still really exciting. So as hard as it is, and I went through it, as hard as it is try to enjoy every moment of it as much as you can. When you’re going through the pregnancy stages, it’s a scary time, there’s an unknown time, but still make sure that you’re going out and doing the normal stuff like buying baby clothes. Just keeping the normalcy as much as possible too, because I think it helps with the sanity of it all.
Mother of Matt, child, Lymphatic malformation
Live a normal life
The advice I’d give [another family] is to take things day by day and talk to them and tell them it’s something that she has to deal with the rest of her life and kind of act as if it’s really nothing, you know? Especially for a young child until you can actually explain to her why she has to be cautious. Live a normal life.
[Later] I guess just kind of accept them for who they are. Treat them like a normal person. She is a normal person, she does everything a normal person does. Don’t base it upon that there’s something wrong with her. Enjoy them because they grow up so fast.
Mother of Emma, child, Venous malformation
You have to do what’s best for your child
Do your homework on the computer and look for the best choice for your child and do anything you can to help them. Whether it means going across the country or not, you need to do what’s best for your child. Everybody always says, why do you have to go so far? Well because this is our only option. Our local doctors said “she is beyond our capability and we’re not going to touch her again, surgically.” She has to go elsewhere for treatment, you find a way to go elsewhere for treatment. Whether it means going across the country to help your child, that’s what you do. No matter where it is, you have to do what is best for your child.
Mother of Annabelle, child, Lymphatic malformation