10 week old with 8 hemangiomas on trunk / legs / arms - need advice please!

[kaylan_edgcumbe]

Hi there,

I have a 10 week old son who was born with two pink/reddish looking bruises, one on the outside of his left knee, and another on his left forearm. Over the course of the next 4 - 6 weeks he developed a total of 8 hemangioma's in various locations: 2 on right shin, 1 on right knee, 1 on left knee, 1 on left forearm, 1 large on on left side where his diaper rubs, one on his chest and one on his back.

After recieving some nasty comments from onlookers at the grocery store ("your baby looks like you put cigarettes out on it") I pushed our pediatrician to get a referral with a dermatologist.

We're going to the Sick Kids hospital in Toronto next week where I'm going to request an MRI to check the rest of his body as I'm concerned about internal lesions as well as treatment options for the hemangiomas that are on the outside of his body. Our peadiatrician has insisted to take a "wait and see" approach, and I don't want to come off as superficial or vain, but it really breaks my heart to see people stare or make rude comments. I was terrified to take my little guy swimming and when we go out in public now I cover his legs and arms up with a blanket to avoid stares and ignorant comments.

I'm glad I pushed for a referral and that we're beeing seen by a dermatologist, but at the same time I have so many questions and would like to be informed of treatment options if this doctor has the same "wait and see" approach.

Can anyone give some insight / response to my questions below?

1) How do you deal with ignorant comments from people? Any great lines to shut these people up when they accuse us of burning our baby with cigarettes?! that broke my heart...

2) what is the best way to find internal lesions? I'm terrified he has lesions on his brain - an ultrasound won't detect these, am I over stepping my boundaries by requesting a MRI

3) Is Laser or surgery feasible for such a young baby?

4) If we were to wait for the hemangiomas to involute themselves, wouldn't the skin affected still be disfigured in some way? Why wait for them to grow over the next year and a half only to have a larger area of damaged skin?? Am I understanding this right? If this is the case, why dont' doctors remove them or treat them earlier on instead of watching them grow and get larger?

I'm going to try to attach some photos of Liam, they're not overly good as far as showing them, I'll try to post better photos once he's awake.

I would appreciate any comments / advice / insight as we're anxiously awaiting this appt. and I'm terrified at the thought of my little man having internal lesions.

thanks,

Kaylan

kaylan.edgcumbe@sympatico.ca

[nickbar]

1) How do you deal with ignorant comments from people? Any great lines to shut these people up when they accuse us of burning our baby with cigarettes?! that broke my heart... I CARRY CARDS WITH ME TO HAND OUT TO ANYONE THAT WANTS MORE INFORMATION. TYPICALLY I USE THEM IF I SEE A BABY WITH A B-MARK AND i WANT TO OFFER SUPPORT. BUT, THIS CAN BE HELPFUL IN SHUTTING PEOPLE UP AS WELL. I KNOW THE PUBLIC CAN BE VERY RUDE AND IGNORANT...IF YOU ARE FEELING UP TO IT, A SIMPLE STATEMENT LIKE "MY BABY HAS HEMANGIOMAS, THEY ARE BENIGN TUMORS THAT WILL FADE OVER THE NEXT FEW YEARS"... DEPENDING ON THE SITUATION MAY PEOPLE REALIZE HOW RUDE THEY ARE BEING AND MOVE ON OR CHANGE THEIR ATTITUDES. ONE VERY IMPORTANT THING... TEACH YOUR BABY THE WAY YOU LOOK AT HIM THAT HE IS THE MOST BEAUTIFUL PERSON ON EARTH AND THAT YOU ARE OK WITH EVERYTHING ABOUT HIM. HE WILL LEARN HOW TO COPE BY HOW YOU COPE AND HE WILL SEE HIMSELF THRU YOUR EYES. SOMEDAYS ARE TOUCH AND I REMEMBER JUST WANTING TO RUN INTO THE STORE WITH MY SON AND NOT HAVE ANYONE LOOK OR COMMENT. i WANTED TO BE A NORMAL MOM WITH NOTHING BUT POSIITVE EXPERIENCES IN PUBLIC. SO, I WOULD COVER HIM AS BEST I COULD WHEN I WAS JUST NOT UP TO IT. MANY TIMES AND ESPECIALLY AS I WAS STRONGER EMOTIONALLY...I ALL BUT HELD HIM UP HIGH FOR ALL TO GLORIFY.... I WELCOMED QUESTIONS AND JUST DARED PEOPLE TO SAY SOMETHING... I WAS OUT TO EDUCATE!....BUT NO MATTER WHAT, MY SON NICHOLAS NEVER ONCE FELT ANY DIFFERENT OR SAW PITTY. ONE OF HIS DOCTORS EVEN COMMENTED TO ME ABOUT THE WAY i LOOKED AT HIM... HE SAID "YOU LOOK AT HIM LIKE HE IS THE MOST BEAUTIFUL CREATURE ON EARTH...AND HE KNOWS IT, HE WILL BE OK".
WHEN YOU FEEL OVERWELMED BY A RUDE PERSON/EXPERIENCE LEAN ON THOSE THAT UNDERSTAND... I MANANGE THE SUPPORT GROUP ON MSN (VASCULAR BIRTHMARK SUPPORT GROUP) AND WE ARE ABLE TO VENT AND SHARE AND IT FEELS SO MUCH BETTER.

2) what is the best way to find internal lesions? I'm terrified he has lesions on his brain - an ultrasound won't detect these, am I over stepping my boundaries by requesting a MRI : YOU ARE NEVER OVER STEPPING YOUR BOUNDARIES AS A MOTHER. NO ONE CARES MORE AND IS LOOKING OUT FOR HIS BEST INTEREST THEN YOU. AN mri IS DEVINATELY WARRENTED IN HIS CASE. DON'T WORRY ABOUT OFFENDING THE PHYSICIAN, THEY WOULD DO THE SAME IF IT WAS THEIR CHILD...DEMANDING THE BEST. EVEN IF YOU SON IS NOT HAVING SYMPTOMS OF INTERNAL LESIONS AND OTHER SYNDROMES...IT IS BEST TO RULE THEM OUT AND TO HAVE PEACE OF MIND.

3) Is Laser or surgery feasible for such a young baby?
IT REALLY DEPENDS ON THE LESIONS THEMSELVES AND THE DOCTOR YOU ARE SEEING. YOUNG BABIES DO HAVE SURGERY, BUT IT DEPENDS ON THE URGENCY OF THE CASE AND THE LIKELY ISSUES DOWN THE ROAD.
4) If we were to wait for the hemangiomas to involute themselves, wouldn't the skin affected still be disfigured in some way? Why wait for them to grow over the next year and a half only to have a larger area of damaged skin?? Am I understanding this right? If this is the case, why dont' doctors remove them or treat them earlier on instead of watching them grow and get larger?
IT IS COMMON BELIEF THAT ALL HEMANGIOMAS WILL GO AWAY AND WITHOUT A TRACE. MANY DO. MANY DOCTORS FEEL THE RISKS OUTWEIGH THE BENEFIT. SOME ARE SIMPLY JUST NOT FAMILIAR WITH THE SUCCESSES OF LASER/SURGERY AND THE TECHNIQUES USED TO MINIMIZE RISKS. HOWEVER, THE SPECIALISTS WITH EXTENSIVE EXPERIENCE EVALUATING HEMANGIOMAS KNOW BETTER HOW TO ESTIMATE WHAT LESIONS WILL FADE AWAY AND WHICH WILL NOT. SOME H. DO LEAVE ATROPHIES SKIN. I WOULD ENCOURAGE YOU TO SEND PICTURES AND DETAILS TO DR. LEVITIN ON ASK THE EXPERT FOR AN OPINION ON WHAT YOU MIGHT EXPECT FOR YOUR SON'S HEMANGIOMAS. THE IMPORTANT PART FIRST IS TO MAKE SURE HE IS RULED OUT FOR INTERNAL LESIONS AND/OR ANY OTHER MORE SERIOUS SYNDROME. NOT LIKELY, BUT IMPORTANT TO CHECK. DR. LEVITIN CAN GIVE YOU HIS BEST ESTIMATE ON WHAT THE H. MIGHT DO. KEEP IN MIND THAT ALL H. ARE DIFFERENT.

PLEASE FEEL FREE TO EMAIL ME IF YOU HAVE ANYMORE QUESTIONS, OR NEED HELP WITH ANYTHING. I WOULD BE HAPPY TO HELP YOU GET A SECOND/THIRD OPINION.