Hemangioma & Birthmarks
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Hemangioma & Birthmarks
March 2008
Our 10 month old baby has a deep hemangioma in a highly visible
spot. We went to see a specialist at UCSF and she said we should
consider treating the hemangioma with an operation sometime in the
next 2 years ''before the baby is aware'' that people are repeatedly
responding to the hemangioma. I would love to hear from someone who
went ahead with the operation because, of course, it's hard to think
about putting our baby through even a relatively simple
operation. What were your considerations around age/time? What was
your experience of the operation? How successful was it?
HUGE THANKS!!!!!!
Want To Do The Right Thing
Our daughter had a fairly large Hemangioma on the top of her head and it was
bright pink and raised. We had to be careful brushing or combing her hair as they
are very vascular but we are really happy we let it be because over time it's flattened
out and is barely visible. Our now 2 year old has a flat lightened colored
Hemangioma but it's almost gone! I would suggest getting another opinion because
as long as they are not causing any harm maybe you will be able to leave it and let it
take it's course. I know we got tons of stares and people saying ''Oh my what is that,
is your baby ok'', but in the end it's almost gone and no surgery had to be involved.
Good luck!
jennifer
There are cultures in the world where hemangiomas are highly
valued , even considered lucky or auspicious. Alas, ours is not
one. However, one reason I heard that some cultures value them
is that they are so fleeting. My son had 7 strawberry
hemangiomas as a baby. Two were quite large and prominent. Yes,
he did get stares, and at the pool where they all showed, there
were some children who acted scared or rude. Yet the hemangiomas
were so lovely! One looked like a big kiss right on his chest;
another looked like a button on his hand. The other five were
smaller and drew less attention. Every doctor I talked to told
me to wait before doing anything about them. Perhaps you've
heard too--they tend to get bigger for 9-12 months, then start to
get smaller, and most go away completely with no medical
intervention. You can still see traces of the two biggest
hemangiomas on my now 7-y-o son, but traces only. The other five
are gone. When the two big ones did not completely disappear by
age 7, I asked my son if he wanted to have them removed, and he
insisted, absolutely insisted that he loved them and wanted to
keep them for as long as possible. I love them too, really, and
am glad we still see traces of them. Get a second opinion. And
wait a while, too, to see if they resolve on their own.
Carolyn
Our daughter had her hemangioma removed at 8 months. Hers was on
her torso, but large (like an avocado) and also deep. The outer
skin couldn't support the growth of the tumor and was ulcerating,
causing pain, and we had to have her on antibiotics for fear of
an infection while we tried many alternative therapies (like off
label use of a growth hormone to speed up recovery of the ulcer),
nothing worked so we opted for surgery. We were in New York at
the time and went to the leading birthmark surgeon, Dr. Milton
Waner. She had a 2 hour surgery, and it was one of the most
difficult experiences waiting for her. But, it was the BEST thing
we ever did for her too. She recovered so quickly (maybe a week
at most -- children heal so quickly!). She has an almost
invisible line along her torso (about 7 inches long). I highly
recommend Dr. Waner. At the very least, find out who he
recommends out here. If you have any questions, please email.
susan
I know that many childrens' hemangiomas do in fact disappear over
a period of several years. My son had one on his arm - fairly big
and noticeably dark red- but it did in fact fade almost
completely by the time he was 3 (now I can only see faintest
outline if I'm really looking). On the other hand, my niece had a
very large hemangioma on her face which covered much of her
eyebrow and was pushing down a bit on her eyelid. Ultimately, my
brother and his wife decided to have laser surgery done on it and
they are VERY glad they did b/c subsequent docs have told them
this one was quite deep and would not have gone away on its own.
It was a very hard decision for them at the time, but made easier
by the fact that it was starting to press down on her eyelid and
the docs had concerns about that. They had to have a series of
laser surgeries- maybe 6 or so altogether (this was in NYC with a
doc renowned for doing laser on hemangiomas). My always-adorable
niece is now 3 and doing great (pretty sure she doesnt remember
the surgeries) and at this point, only a very faint outline is
there. I wanted to throw in the 2 cents from a perspective of a
child whose hemangioma would not have just faded away. Good luck
with your decision!
Trish
Oct 2007
Our 4 month old baby daughter has a strawberry hemangiona on her face, about
one inch wide and quite puffy. our periatrician assures us that there is nothing to
worry about, that it will go away, and there is no treatment for it. when i look up
''hemangiona'' it seems that statistics say it could take up to ten years for it to go
away. that worries me. if anyone reading this has had experience with their child
having a strawberry heangiona, i would love to hear about how long it lasted etc.
thank you very much.
fd
My daughter had one too - it was a small one (bigger than a dime,
smaller than a nickel) and it was on her head, near the crown.
It's now pretty covered by hair as she is 18 mos, but it is also
almost gone! It's no longer pronounced/puffy, just slightly red
an the size of a large mole.
anon
My son (now almost 4) has a hemanginoma. We were upset at first
because it was so large and he was so small! It popped up when
he was just a few weeks, and I'll bet your daughters at 4
months is probably just growing before your eyes and it can be
quite upsetting. There is a highly regarded specialist at UCSF,
I don't recall her name but my dermatologist Dr Glogau in SF
recommended her. My pediatrition did as well. She gave my son a
series of injections to stop the growth and help flatten it
out. This was covered by insurance.
It can be quite frightening and upsetting but please rest
assured that they do fade, and they do go away. My son is
almost 4 now and we LOVE his spot! His face has grown and
matured and it's nearly gone but we just see it as part of him
and a little reminder of his infancy. I think we will be truly
sad when the spot is completely gone because we think it is
just so cute like the rest of him.
When his sister showed up we joked with him - hey? where's her
spot? and my husband and I have found various discolorations on
ourselves to point out, see - Mama has a spot on her tummy,
Daddy has a spot on his leg. Please know however, that our
lightheartedness about the whole think was a slow transition
over the last few years. But you will adjust as the spot fades
and your child grows. I'd check into finding that specialist at
UCSF and start getting some treatments early on. It will get
better with time.
My daughter, now 4, had a hemangioma on her forehead. It appeared
maybe a month or so after her birth, can't remember exactly when.
About the size of a pea, bright red, somewhat raised. It peaked
at about 6 months as I recall, and was gone by the time she was
about a year old. The only evidence of its existence now is in
her baby pictures.
anon
Our daughter was born with a hemangioma similar to the one you
describe. She just turned one, and it has slowly faded over the
year to almost nothing. Your baby's will probably do the same.
Try not worry!! I know that's easier said than done.
diana
My 11-month old daughter has had one on her ear since birth
(they even re-tested her hearing to make sure it wasn't
something hearing-related). It grew redder and puffier in her
first few months of life, and we were very worried. Her
pediatrician told us it would likely go away within a few
years. It is now hardly noticeable! The puffiness is gone,
and it has faded quite a bit. I really think it will be
completely unnoticeable in another year.
esther
My son had seven, count 'em, seven hemangiomas as a baby. They
ranged in size and puffiness, and were scattered across his body.
The most prominent ones were on his chest and on his wrist. He
is now seven years old, and four of them are completely gone,
while three are quite faded. Your doctor is right, most
hemangiomas fade on their own within a few years. If they don't
and it's a problem for you or your daughter, there are laser
treatments that will take them away. But give them time to
resolve on their own. And don't be surprised if you find
yourself missing them as they fade and start to go away. There
are cultures that consider hemaniomas to be quite lucky markings
because they are so fleeting. Try to see your daughter's that
way and it will be.
another mom
Our daughter has a hemangioma of about that size, originally
puffy or pillowy, on her chest... she's now six, and while it's
flattened to a significant degree, it's still quite visible.
We've not really investigated options for dealing with it, but
it's not as visible as one on the face would be, and she seems
fine with it for now.
Dad
My daughter was born with two hemangioma: one on her neck (one inch by
one inch)
and one very small one near her anus. She is nearly three and the one on
her neck is
quite faded. The one on her bum looks the same. During infancy, the
hemangioma
were puffy and red and looked like they were fragile enough to bleed
when you
touched them (but never did). Your pediatrician gave you good advice.
They do fade
with time.
Greta
My daughter, now 5, had a hemangioma on her lower lip. At
first we too received the standard advice--wait. I am pretty
conservative medically so this seemed fine to me. When my
daughter was around 1 to 1.5 yrs old we took her to Dr Frieden
at UCSF. You will see from the archives that she is the expert
in the Bay Area and we are lucky to have her here. She was
able to tell us at that appointment that my daughter would
definitely require surgery to remove the hemangioma. She
wanted us to wait until the hemangioma had begun to resolve on
its own and until she was older than 2. We had the surgery at
UCSF last year when my daughter was 4. We felt we had the best
possible care and although it was harrowing everything worked
out very well. At UCSF--if Dr. Frieden recommends it--you can
take your child to the vascular anomalies clinic where
specialists from a large variety of fields evaluate your child
and come up with a course of action. So I guess the main point
I would emphasize here is that Dr. Frieden will be able to tell
you what the best course of action is. Of course, this will
depend on the case. I know of many in which the hemangioma did
resolve completely on its own.
To me the social/psychological ramifications are as important
as the medical. Until past the age of 3 NOT A SINGLE CHILD
ever teased or said a mean word to my child. She went to
daycare and pre-school had plenty of friends; she is exremely
outgoing and socially confident (much more so than her
parents!)
BUT the problem was the adults. Almost every single day an
adult would ask me in front of her ''what happened to
her?'' ''What's wrong with her'' etc. And all this for a
birthmark. My husband and I were often enraged and tried to
figure out ways to forestall comments but this was not always
possible. Also, many well meaning people in stores for example
would ask my daughter ''did you fall down?'' she would just be
confused until she was mature enough to answer. It was just
incredible to me since no one would walk up to an adult they
don't know and ask ''what's wrong with you?'' etc.
A little after the age of three I noticed some children would
ask my daughter about it. They were kids in parks etc. not
kids at her school. But there were always friendly and simply
curious. They never teased. Still I wish we had had the
surgery maybe 1 year to 6 months earlier for this reason.
anon
July 2005
Does anyone know of a good pediatric dermatologist in the East
Bay? My 10 week old daughter has two hemangiomas on her face. I
would like to get a second opinion about possible treatment
options as I have been told to let them grow bigger for a year
and hope that they then fade away. Anyone have experience with a
child with this vascular birthmark?
Our 15 mo. old daughter was born with a 4 mm. hemangioma that has
not grown nor diminished, as predicted. It is inside her hairline
so we have felt no pressure to alter it. Just before she turned
one, it became a bit flaky, a few white flecks and the ped.
thought this a sign that it would go away. Alas- she still has
it. No advice for you, just our situation... a little advice,
afterall: I would wait to see what happens within her first year.
christina
May 2003
Hi
We are parents of 13 months twin girls. Unfortunately, one of
our daughter's developed a hemangioma on the left side of her
cheek at three weeks old. We have been lucky enough to have the
*best* care availble. Dr Freiden at UCSF and now we see Dr.
Reinisch in LA. We live in Berkeley but will go LA for a follow
up surgery in May.
I would like to meet other families who are experincing or have
experienced Hemangioma - just to talk:).
anon
When I was 14 mo. old, I had a very large hemagioma removed
surgically; it was so large my parents had to authorize for
pictures to be published in a medical journal. They removed a
hernia in my belly button at the same time. All went well I
guess...I don't remember a thing. I have a scar on my left side
but always wore bikinis anyway. I am 42 now & married with 2
healthy kids.
Jenny
My 14 month old daughter also has hemangioma, but on her left
eyelid. And we also see Dr. Frieden at UCSF. It has stopped
growing after using a steriodal ointment and so have elected not
to do surgery at this time. But it's an option we'd like to keep
open if the hemangioma does not recede. I don't want it to
affect her self-esteem as she gets older. I'd love to talk more.
Frances
My son has several hemangiomas, two of them significant,
but on the advice of his doctor we did not seek treatment for
them. Rather, we are letting them resolve on their own.
Now that he is two-and-a-half, we can really see them going
away. I'm not sure how long it will take for them to
disappear completely. But it's quite different in the second
year to watch them go away rather than get bigger as was
the case in his first year. You didn't say what treatment you
are getting, but I hope it is working.
Carolyn
My almost 7 month old daughter also has a hemangioma on her left
cheek, it is close to her eye, and it started too when she was
about 3 weeks old. We also have been seeing Dr. Frieden at
UCSF, who recommended just to watch it. The hemangioma is now
in the latent phase. We will see if there is need for surgery
in about 6 months to a year.
I also live in Berkeley, and would like to talk to other parents
whose children have Hemangiomas.
arohena
My son saw Dr. Frieden several times. He now is nearly 3 and his
hemangioma - once bright red, very raised and the size of a half-
dollar coin (above his right eyebrow) is now barely noticeable.
I, too, was like you, at first, research and constant
dermatologist visits - even consultations w/a pediatric plastic
surgeon.
In fact, I believe my research came up w/the physician you're
seeing in LA. I guess I probably sound like a broken record to
you (as other moms and my umpteen physician's sounded to me) -
it will go away, not disappear.
I was, probably like you, obsessed w/his hemangioma. I thought
it would be disfiguring and he would be picked on. Now he
barely gets any comments and he only very recently started
noticing it himself.
Today his hemangioma is 70% involuted, more than 50% skin color
(vs. deep, deep red) and if I close my eyes and rub my fingers
across it, I can't tell there's any skin disruption.
Terry
July 2003
Can anyone recommend anything to lighten a brown birthmark?
Thank you
I have a friend who had it removed by laser. I assume a
dermatologist could give you information about all the latest
techniques...
Anon
In the latest issue of Parents Magazine there is an article
about how dermatologists can really lighten up very disfiguring
birthmarks so that they are much less noticible. I can't
remember if they used laser or what. You can view the magazine
at your local library and read that article. Sometimes you can
find free copies at your pediatrician's office or other places
where little kids frequent.
Best Regards!
Tiffany
September 2001
My 15 month old son has a hemangioma or strawberry mark on his forehead.
It's the size of a half-dollar coin. I am doing research on various options,
including steroid injections and/or laser surgery.
His current pediatric dermatologist is highly regarded, yet she's very
conservative in her approach to treating his hemangioma. I am seeking surgeons
who have had great success with removing hemangiomas on children with little or
no scarring. If at all possible, I would like to consult with a surgeon who is
affiliated with UCSF or Stanford, but am more interested in a surgeon who has
specific experience with these kinds of cases.
Thanks in advance for any leads.
Terry
I don't have a recommendation of a dermatologist, but I thought I would
mention that I had a similar, very red and obvious birthmark on my forehead
at birth. My pediatrician didn't want to do surgery, but instead ran a
piece of dry ice across it several times. Apparently it does something to
the blood vessels. It has slowly been disappearing ever since, and now, as
an adult (and for a long time--since back in gradeschool) is barely
noticeable. Just a thought. Ann
My daughter has a Port Wine Stain and we had it treated while she was very
young through Ilona Friedan at UCSF. She is highly regarded and conducts
research as well as laser treatments for children. Strawberry birthmarks
are by nature temporary, if I recall correctly, and will resolve themselves
eventually. Permanent birthmarks such as Port Wine Stains will not. My
daughter still has her birthmark, although it is less large and dark as it
was at birth. Overall, I would say that parental anxiety over the impact of
this condition upon of our children may outweigh the reality. Especially in
the Bay Area where it seems society is a bit more enlightened about
individual differences.
Our daughter is well adjusted, popular at school, and probably stronger than
she would be otherwise. On the other hand I understand the desire to want
to do all that you can to make life easier for your child, we had the same
approach. However, the actual treatments can be quite stressful for the
child, something we weren't prepared for really, and to this day we wonder
whether they had a more negative impact on our child than the birthmark
itself. The doctors insisted that we had to do this before there was any
melanin build up so we went with the program. Since putting children under
anesthesia is not recommended at younger ages, she was awake, strapped down
and blindfolded during treatment. As you can imagine it was quite awful and
absolutely frightening for her. I would be happy to discuss this in further
detail with you, and talk about the social, medical and other issues that we
experienced.
For several years I have been a patient of Dr Julie Billings, dermatologist, who works
out of the Summit Medical Center buildings in Oakland. She's thorough,
knowledgable, informative.
Jill
I missed the posting for a red birthmark, I just saw the response.
I highly
recommend Dr. Iona Frieden at UCSF. She is a pediatric dermatologist. My daughter
has a small strawberry hemangioma, which I was extremely worried about. The doctor
relieved all of my fears and told us that 70% go away on their own by age 5,
90% by age 9. I do know a lot about these birthmarks feel free to e-mail me.
Sharon
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