What should I tell my 3 year old about his treatment?

[hamsgirl]

My nearly 3 year old has a large port wine stain (birth mark) on his leg, foot and bum.

He had one laser treatment 6 months ago. It was fine - not exactly a fun day mainly due to lack of food and having to stay at the hospital all day but it was OK and as he was 2.5 (with poor speech) I didn't have to explain why we were there. He just accepted it.

He is due another treatment next week and now he is nearly 3, he is much more aware and he will definitely ask me why we are at hospital and what the doctors are going to do and why can't we go home, why he can't have anything to eat etc etc.

He (so far) loves going to hospital so I'm not worried about him being scared (and also he gets to spend a whole day on his own with me and gets to go on a tube train which he loves). The main problem is that I don't want him to get any hang ups about his birth mark. How can I tell him that the doctors are trying to make his birth mark go away without him thinking that the birth mark is something that shouldn't be there?

Thanks for any help.

[tess]

I have struggled with this idea, too: how to address with my daughter the dichotomy that I love her "just the way she is" (birthmark and all!), but that we're also trying to lighten her birthmark as much as possible. She is still too young to know what is going on, but it is something I know we'll have to address in the future.

Would it make sense to focus on medical rather than aesthetic reasons for treating the birthmark? What about explaining that the treatments are because the PWS can grow/thicken with age and become uncomfortable (cobbling, bleeding, etc.)... rather than focusing on trying to make it "look better."

I would love to hear input from parents with older children who have had similar discussions already.

[zuzuspetals]

My daughter Josie is 22 months old. She has pretty well-developed language skills (I like to brag, because I'm a speech-language pathologist!), and has thus been asking about her birthmark and treatments for about 3 months now.
For now, I tell her that we go to get treatments to "Keep [her] birthmark healthy". This seems to be enough for her, at this point. The days before treatments, she walks around explaining to everyone that she is getting a treatment to keep her "mark healfy". I don't ever talk about making the birthmark go away or making it less red/pink - I just try to keep it all about keeping her healthy.
I'm sure she'll want more elaboration on this eventually. My current plan of action is to explain to her that her birthmark is pink because there is more blood in her skin there, and that we get treatments because we do not want too much blood to be in her skin or it could cause bumps and bleeding.
I don't know if this explanation will work, but it's the best plan I have at this point! Good luck with your 3 year old - he sounds like a brave guy!

[Halimom]

My daughter has a hemangioma on her cheek and she is also 22 months old.
I am having a hard time deciding whether we should seek treatment as we are in Canada and they are all about the wait and see approach. Currently the plan is to wait until she is five years old, to see if it shrinks enough so that she can get away with just laser treatment to get rid of the veins. Her H. looks like a big bump on her cheek and is veiny.
I have been and am still asking the same questions as all of you and wrote to the developmental specialist on this site. She wrote back and her suggestions were very helpful. So I include her comments here:

"First of all let me tell you she is adorable.. She looks like a happy, healthy little girl,

Secondly, by repeating how beautiful and happy and healthy she is to her, is step number 1. By introducing her to everyone and not "protecting" her is the best steps you can be taking. You can eventually tell her she has a "special mark, or a boo-boo" or later use the work "hemangioma" to her is OK. You can explain to her it's only "temporary" ,,and her doctor is helping her with it, just like when she gets sick and you take her to get better,,(ie colds, flu ear-aches, etc)'; But all of these lessons are taught to her with the intention of making her a person first, and the hemangioma separate from her. She is not a hemangioma, she HAS ONE.

You can give her information to teachers, so they are aware of what is going on.. but I must reiterate, she needs to know every step of the way, it's OK, to have this, it doesn't hurt her, and it doesn't define, as she gets older and you explain more to her use examples, like people who wear glasses, and teens who have acne.. even a small scrape on her knee. these are meant to teach her.. things happen, things don't always look ideal, but w/e it is,,she is not the "identifying mark"

About further treatment, that is really, "your call"..What I always explain to my clients,,"Knowledge is Power"

Let me know, if there is anything else I can do for you,

Elissa Uretsky- Rifkin, M.Ed. CMHC
Clinical Mental Health Specialist
Vascular Birthmark Foundation
314-495-7531
psyelectro@aol.com

hope this helps.
Judy Obersi

[nickbar]

Elissa Rifkin gave me great advice as well when my son was an infant. She told me about how she raised her daughter and I wanted my son to be as confident, outgoing and successful as her daughter. I am happy to say that my 5 year old son explains his hemangioma (or pictures of it, because it is gone) like a badge of honor.... he won! Another great resource for families dealing with pws... Stephen Dale. This teen has a super attitude about his birthmark and how it doesn't define him... how he can go after his dreams and overcome any obsticle. Check out the stephendaleproject.com

Corinne

[nickbar]

I should add that Stephen and my son have had treatment... there were medical reasons to do so, but regardless... it is something that can be treated and can be seperate from the message that we love our children no matter what with or without a birthmark.

C

[hamsgirl]

Thanks everyone for very helpful responses. He had his treatment a couple of weeks ago and it all went well and was pretty uneventful.

He was pretty unphased by it all - I think I underestimated how much he still just accepts things that happen. In the end I didn't have to go into much explanation. I think it helps (in this context anyway!) that he has had problems with his ears so has been to hospital quite a bit so he thinks it is normal. The worst bit was when he started saying "I'm hungry" at lunchtime but that seemed to pass.

He had a nice time at the hospital really except for about half an hour after waking up from the the GA but he doesn't seem to remember that - only the fab time he had beforehand playing with the other children.

For the future, I particularly like the idea of telling him that the treatment will keep his birthmark healthy - focussing on the positive. Definitely will remember that one. Thanks.