Welcome to Birthmarks and Hemangiomas InterNETwork Support Group Page 3
name: Mark Segal
email: mark@biostat.ucsf.edu
At birth, my daugther had the faintest, tiniest discoloration adjacent
to her ear.
The attending pediatrician predicted that a hemangioma may ensue.
At 3 weeks or so a sizeable, surface hemangioma was apparent with the classic
bright red coloration.
Around 7-9 weeks a deep component emerged, grew rapidly and threatened to
occlude her ear canal.
After being told to ignore it by our pediatrician, alarm at the rapid growth and
ear canal
invovlement prompted referal to a pediatric dermatologist. The pediatrician had
also characterized
the scabbing over an ulceration as a signe
of healing. The dermatologist thought otherwise. She was immediately placed on
antibiotic and
prednisone. Also, duoderm was used to cover the ulcer. That is where we are
now -- 3 months,
one week of prednisone. As this may well be a a
parotid hemangioma that are resistant to prednisone I would be most interested
in hearing
from anyone with useful info/advice. Any insights into treatment, assessment
etc would
be greatly appreciated.
name: Shelly Durance
email: ddurance@dryden.net
We have a really good news story. My daughter is now almost 3 years
old and looks perfectly "normal". At 3 months of age she developed a slight
swelling (no discoloration) along her jaw, just under her left ear. She was
diagnosed with hemangioendothelioma after ultrasound, x-rays and an MRI were
done. All doctors we saw recommended the same treatment - NONE; just to wait
and let it naturally go away. We were told that it would grow until about 9
months of age, plateau, then start to slowly disappear as her body reabsorbed
it. We reluctantly agreed to wait and see. It broke our hearts every time
someone would stop and stare or ask (it seemed to us) stupid questions. When she
turned 9 months old, it did stop growing. Then it began to disappear quite
rapidly and ahead of schedule. Strangers still stop to comment on our daughter,
but now its her personality and sweet disposition they see, not her grotesquely
huge cheek. We hope others will take heart and try to be!
lieve in their doctors advise to
"wait and see". We're really happy no treatment was insisted upon.
name: Susie Feaster
email: medicfam@rmci.net
I am 33 years old and have both hemangioma and lymphangioma. I have
had 5 surgeries to remove the tumor and went through 3 months of radiation.
Luckily, my scars are covered by clothes as mine is located on my side. I have
been all over the US trying to find the answers. No one really has all the
answers which can be really frustrating.
I think I am finally coming to grips with what I have. It has been one of the
hardest things to face. My daughter, who is now 6, has a stork bite on the back
of her neck. The doctors are watching it but so far, so good. It has not grown
any larger than when she was born. My doctor says that sometimes it can skip a
generation and also he
feels that females are more suseptable to it than males. Who knows?? Anyways,
if anyone would like to chat, just email me.
Good luck to all of you!! All of you are in my prayers. God watches over all
of us.....just keep the faith.
Susie Feaster
name: Becky
email: becky.keith@mail.mei.com
My daughter was born one month premature. In the incubator, we noticed
a mark on her head. It looked like a little scratch. Well, about 9 days later
it became red and looked like a little heart. The doctor told us it was a
hemangioma. We knew what they were because my two nieces both had them. Our
daughter's birthmark is located on the left side of her face near the left eye
but far enough away from the eye not to cause a vision problems. We went to a
dermatologist when she was 5 months old and found out there that she had a
"mixed" hemangioma. She also had scratched it when she was 2 months old and we
were told she would have a permanent scar because of it. Fortunately, it has
already started to show signs of not growing anymore. (It's about the size of a
quarter, but protrudes out of the skin.) Our only 2 options were either giving
her steroids orally, or just leaving it alone and letting nature take its
course. We decided to wait and see what happens. Well, now she is 8 1/2 months old
and the hemangioma has stopped growing. It seems to be shrinking and changing to a more
grayish color. We only wish the people would stop looking at the birthmark with
such discretion. I was so happy to find this support group. It took me a while
to finally find out that there are other people like us going through the same
situations. Thanks.
name: carrie johnson
email: hnanemaj@aol.com
Our daughter Emma was born sept, 19, 1996. We noticed an small red spot
smack in the middle of her forhead which we figured would go away. At 2 months
old we realized it was getting bigger so we took her to a plastic surgeon
specializing in laser surgery. He told us at that time that he thought it was a
port wine stain. 2 months later (emma is now 4 months) we went into his office
for the treatment. The doctor was a little bit shocked at how much it had grown
and that it was now in his opinion a strawberry hemangioma. We went ahead and
had a treatment done and are we ever glad we did. After reading some of the
horror stories, we only wish that we hadn't waited the two months in between
visits. We don't quite know what to expect in the weeks and months to come, but
they are using a vera pulse laser and I am pretty sure this guy knows what he is
doing? Is anyone out there with long term results with the pulse laser
treatment??? Please e-mal me at HNANEMAJ@aol.com THANKS!
name: debbie
email: flyermom88@aol.com
i have been diagonosed with a hemangioma in the T12 area of my spine.
This has repeatedly caused my much pain and discomfort. I am in the process of
learning more about this condition and also what can be done to relive the pain
i feel. the med. people i have been dealing with don't seem to know a whole lot
on what to do , so i am looking for HELP.
name: Jim and Christine
email: Anson5@aol.com
Our daughter Anna was born with a Cappillary Hemangioma over her right
eye underneath her eyebrow. She is twelve weeks old now and the hemangioma has
grown considerably. Her eye is now approximately 70% shut and we are making a
decision and how to treat it to prevent the hemangioma from damaging or robbing
our daughter of her eye sight. The consensus among our doctors is the injection
of steroids into the hemangioma. Has anyone had an experience with this
treatment or with oral steroids or both? We are trying to decide which is
better. Has anyone one had experience with other treatments that they have
found effective? Please share your experience since we are going out of our
heads trying to decide what to do. Thank you!!!
name: Christine Balsamello
email: sfishin1@aol.com
My daughter Stefanie is 4 1/2 yrs. old and has a hemangioma on her
upper lip. We are looking to have it removed and would appreciate any info.
that you could give.
name: CINDY CLAWSON
email: MCCLAWSON@AOL.COM
MY DAUGHTER WAS BORN WITH A LARGE FACIAL HEMANGIOMA, ACTUALLY AT BIRTH
IT LOOKED LIKE A BLACK EYE. HER HEMANGIOMA IS ON HER LEFT CHEEK NEAR THE EYE AND
AROUND THE NOSE AND DOWN TO HER LIP, SHE ALSO HAS SOME IN HER MOUTH. AT ONLY
SEVERAL WEEKS OLD IT BECAME BRIGHT RED AND THEN PROGRESSED TO GET BUMPY. SHE HAD
AN MRI WHICH INDICATED BOTH DEEP AND SUPERFICIAL HEMANGIOMAS. SHE WAS GIVEN
STERIODS WHICH GREATLY HELPED THE HEMANGIOMA, SHE WAS MISERABLE. WE BEGAN LASER
SURGERY AT 4 MONTHS OF AGE, THE LASER WAS VERY SUCCESSFUL AT REDUCING THE SIZE
AND REDNESS. AT 14 MONTHS OF AGE WE OPTED FOR RECONSTRUCTIVE SURGERY, WHICH WAS
ALSO VERY SUCCESSFUL, BECAUSE SHE HAS SUCH A LARGE HEMANGIOMA AND ONE THAT
ENCOMPASSES SUCH A LARGE PART OF HER FACE IT COULD NOT BE COMPLETELY REMOVED.
SHE IS KNOW 2 1/2 YRS OLD, THE HAPPIEST CHILD EVER, HER HEMANGIOMA CONTIUES TO
INVOLUTE AND WE SEE IMPROVEMENT CONSIDERABLE. I WOULD RECOMEND TO MOST PEOPLE TO
INTERVENE AND BE VERY PRO-ACTIVE TOWARDS TRE!
ATMENT. SHE STILL HAS A LONG WAY
TO GO BUT WE'LL CONTINUE TO SEE IMPROVEMENT. WOULD LOVE TO HEAR FROM ANYONE.
name: Sandra Collins
email: RNCollin6@aol
My daughter Hannah is 6 years old and has an extensive history of
airway and facial hemangiomas. A large forehead and scalp hemangioma was present
at birth and continued to grow as the months went on. The final results were
hemangiomas of the airway which required a tracheotomy for 4 and 1/2 years,
lower lip, left upper eyelid, left ear, neck, chin, cheek, and internal chest.
She was treated with steroids, interferon, pulsed dye laser, CO2 resurfacing
laser, and several surgical excisions. Hannah's appearance is greatly improved
but residual scarring and atrophic skin is permanent I am afraid.. Hannah's
plight inspired myself and her doctor, Dr. Linda Brodsky, ENT to open a
Hemangioma and Vascular Birthmark Center at the Children's Hospital of Buffalo
where I am a pediatric nurse.. I welcome email or phone calls from any other
hemangioma parents.
name: Tammy
email: superdupermom@hotmail.com
My daughter Samantha was born 5 weeks early and was in the hospital for
two weeks. She had alot of tube running down her throat and surgical tape on
her mouth and cheek to hold the tubes. After about a week or so they took the
tubes out and removed the tape. There was a little red mark the size of a pea.
My husband and I thought they had been rough in removing the tape and broke some
blood vessels on her left cheek. When our pediatrician came that evening to
evaluated her progress, we told her we were concerned about the nurse being
rough in removing the tape from Samantha's face. Our Dr. who we Love and trust
told us it wasn't tape that it was probably a hemangioma, and that we would know
for sure within a month. She explained a little bit about hemangiomas and told
us if it grew (because some don't grow) that she would refer us to a Dr. in
Little Rock for laser treatments since it was on her face. Within a month it
did start growing and we set an appointment with Dr. Waner at the Children'
s Hospital (we were told he was the best). We took her to see Dr. Waner and he
has treated her birthmark with lasers ever since. She has had 7 laser
treatments and he doesn't think she will have to have anymore. He told me on
our last visit that if it wasn't gone by the time she was a year and a half, he
will be very surprised. Her hemangioma has started to change in color and has
stopped growing. My husband and I are thankful that it has not gotten as big as
some that we've seen. Its about the size of a quarter on her cheek. Alot of
people have made comments about us having it removed, we are just thankful that
she is alive and healthy. She is our first and last daughter, we have waited 15
years to have her. We have two other children, both boys, and our whole family
doesn't even notice her birthmark anymore. She is a joy to have around. I have
read alot of the letters from other parents and my prayers are with them, I know
what they are going through. But we should never lose sight of the fact
that other than the birthmarks on our children, they are alive, happy and
healthy.
Prayers for all, Tammy
email: dierksue @aol.com
My daughter was born with a strawberry mark on her nose that no amount
of laser would help. When she was 3 it started growing again. We found Dr.
Mulliken at Boston Children's and he was ver helpful. He removed it and Dr.
Pribaz reconstructed her nose. They did an outstanding job.
name: Roberta Wilhelm
My 3 1/2 yr. old has recently been diagnosed with cavernous
hemangiomas.
I am trying to find information on what I can expect and possible treatments if
and when necessary.
name: Susan Totty
email: sdtotty@pen.k12.va.us
My husband & I are in the process of adopting a 5 year old little girl
from Romania. She has been diagnosed with hemangioma of the face. I went to
visit her in December and took a video of her that I have shown to quite a few
doctors. They all have told me that she has the worst case they have ever seen.
It has been very discouraging. This web site has given us hope and we are
continuing on with the adoption. She is a sweet litle girl. The entire right
side of her face is affected. Her lower lip is the worst part, it is much
larger than the left side and very thick. There has already been a surgery
preformed on her in Romania and she has quite a bit of scarring from the corner
of her eye all the way back to her ear. I hope that someone can help her. She
is a beautiful little girl on the left side but, the right side is a mess.
name: Jackie
email: tbenson342@aol.com
My son, Sean, has a hemangioma on his upper lip. It was not present at
birth but showed up as a faint red line when he was 2 days old. It continued to
grow for about 3 months until it was about half an inch wide and raised about
1/4 inch. It extends from below his nose thru his upper lip. For the next 3 to
4 months the hemangioma began to change from bright, shiny red/purple to a dull
pink. Now at 13 months of age Sean's hemangioma is almost all gray/white in
color and is much less puffy. For the first time this week I have noticed him
feeling it and pulling at it. From the beginning the pediatricians have told us
that it would go away eventually. They also said that a flap of flesh may
remain and have to be surgically removed. After reading the information on this
and other sites we decided to "wait and see" since no organ was being
threatened. We have been fortunate that it has gone down so much so quickly.
name: Sharon Thompson
email: ShazThom@aol.com
My daughter is 7 months old and has a cavernous hemangioma on her right
cheek. We are going to see the laser specialist at Bridgend Hospital (South
Wales) on 25th March 1998. Can anyone give me any info. about this type of
birthmark and its treatment?
name: Demi
email: locico@advertisnet.com
All 3 of our daughters had hemangiomas at birth. Our oldest daughter is
10, she had a slightly raised patch of small bumps that covered the inside of
her left wrist. It has basically faded completely away. Our 7 year old had one
on her head, about where her part line is. It was about the size of a quarter.
It's almost completely involuted. Our 5 year old had the largest one, it is on
her chest, just at the base of the neck. It's about 3-4" wide and 2 1/2" tall.
It used to stick out about 1/2". At 3 months old, we had to have laser surgery
because of bleeding. The doctors said it was growing faster than she could
produce skin. The laser lightened it from a dark purple to a reddish color. We
had a couple of treatments of injections. They seemed to do no good. I'm happy
to say that now it's involuted to almost the surface of the skin and has faded
considerably. People's rude questions are the most difficult, but we are
hopeful that she'll not need more surg!
ery. I highly recommend giving
nature a chance for it to go away. If we are creative with her clothes, people
don't notice it. We are so lucky to have the internet to keep us informed. All
I was given was a paragraph copied from a medical book.
name: Elisabeth and Anders Freden
email: anders.freden@qbranch.se
Our daughter Maja was born June, 7, 1997, six weeks premature. In the
incubator we noticed that Maja had discoloration all over her body. When Maja
was seven days old the marks started to grow very fast. Today Maja has 140
strawberrymarks all over her body. The smallest are the size of a pinhead and
the largest are two inches in diameter (5 cm). When Maja was six weeks old a MRI
was made that showed that Maja had two small hemangiomas on her liver. After
that Maja had a steroid therapy with very good results. One hemangioma on the
liver disappeared and the other one stopped to growing. The hemangiomas on her
skin also stopped growing during the steroid therapy. After the therapy they
started to grow again. When Maja was four months old the marks stopped growing
and a retrogradation started. We have met a lot of doctors and they all have
different opinions. Our demartologist, who we have big confidence in, thinks
that we now should let nature take its course.
Maja had problems to put on weight and when she was six months old the doctors
discovered a heartproblem. She has a 0,2 inch ( 5 mm) atrial septal defect and
the heart is also enlarged. Maja is now nine months old and has started to put
on weight after taking the drug digitalis. Her weight is today 12.4 pounds (5.6
kg). There might be a correlation between the big amount of strawberry marks and
the enlarged heart.
Despite all of Majas problems she is a beautiful baby and she is happy and
healthy.
We would like to get in contact with people having experience of hemangomia
combined with heartproblem. We are living in Sweden (we read and write English.
Elisabeth & Anders Freden
name: Naomi Schwartz
email: nsRom@aol.com
our son Jon, now 25, was born with hemangioma infiltrating fingers and
the palm of his right hand. We were told to wait and see, it would go away. At
age 14 he had major surgery to remove vascular tumors from 2 fingers. This
somewhat alleviated the terrible disfigurement as well as pain and discomfort,
until puberty hit in full force and the pain got much worse. Many consults with
orthodpedists, hand surgeons, plastic surgeons, dermatologists, radiologists,
vascular specialists, etc. No one really wanted to touch it but the pain was
growing unbearable, espec in one finger; finally this middle finger was
amputated in 1992. Since then he has had more surgery on the remaining finger
and palm, but this didn't do any good. Now he's trying to finish college, and
maintain some relationships and "live with" this pain. All pain killers that are
strong enough to kill the pain also knock him out. We'e still looking for help!!
name: Michelle Fenstermaker
email: michelle_fenstermaker@fitch.com
My son Jack, now 15 months old, was born with what the doctor's thought
was a hematoma (birth trauma) to the right side of his head and ear. After many
visits to the pediatrician and neuro surgeon, our son was admitted to the
hospital at 4 weeks old. His "hematoma" was now considered to be a hemangioma
that was trapping platelets. This is called Kasabach Merritt Syndrome. He was
started on prednisone as well as alpha interferon. Jack did not respond to the
steroid therapy and required numerous platelet transfusions. We finally took
him to see a leading specialist in the field, Dr. John Mulliken, from Boston
Children's Hospital (we live in Columbus, Ohio). He and Dr. Patricia Burrows (a
leading radiologist) suspected Jack did not have a typical hemangioma but rather
something called a kaposiform hemangioendothelioma. Dr. Mulliken did a biopsy
to confirm that diagnosis. Interferon is the treatment. We then started to
wean Jack from the steroids. In the meanti!
me, because steroids suppress th
e immune system, Jack developed PCP, a very serious and oftentimes fatal
pneumonia. He was put on life support for 16 days while his lungs recovered.
He is a miracle because he survived that horrible ordeal. He's now a healthy
happy 15 month old. The interferon corrected the blood syndrome and started to
shrink the tumor. He has been off interferon therapy for five months with no
recurrence of the blood syndrome or growth of the tumor.
I firmly believe that steroids can be very dangerous and that alpha interferon
is a miracle drug!
name: Robin Silverman
email: Pere@aol.com
My daughter is 5 months old and has a compound hemangioma the size of a
quarter on her cheek. We noticed it when she was 1 week old and has grown very
slowly since then. Yesterday when we were bathing her we noticed another one
starting to grow on her back. We want to be aggressive and start some type of
treatment ( especially for the one on her cheek). We are torn between steroids
and surgery as laser treatments will only lighten her hemangioma and we will
still be left with the deep part. I would welcome any suggestions or support.
name: J. Wilson
email: wilsonj@grandforks.means.net
Currently we are in the process of making the tough decisions required
to treat the hemangioma on our 4 month old daughter's eyelid. We have had so
many different opinions from a variety of doctors. I can't add much advice to
this support group except to say that Linda Shannon's book has been an
invaluable reference in dealing with this problem. I highly recommend it to all
those going through this sad and frustrating experience.
name: Tami Ciarletta
email: spookytipc@aol.com
My son is now 11 months old. He was born with
two strawberry hemangiomas, one on the back of his neck , this one has already
faded, and another on the back of his head. It is about the size of a dime and
has not really show any great amount of growth since birth. When he was 7
months old we had tubes put in his ears and at the hospital we noticed a small
lump above his right breast. It was blue in appearance and about the size of a
pebble. We went to a pediatric surgeon at scottish rite and he told us it was a
hemangioma and not to worry it should go away by the time he is 9. Well my
husband and I noticed that it has since grown to about the size of a 1inch
rock. I have not been able to find anyone with a hemangioma in this spot and I
am really worried. I don't know who to go see about this, someone who won't
tell me, "things will be fine don't worry." He is my only baby and I know
something is not right. Please help me! Thanks.
name: tony
email: GULFRELIC@AOL.com
She was two weeks old when the ped, felt a lump in her stomach.To make
a long story short she did the steroid thing she did the emergency room 5 times
she did blood tranfusions twice.After a year of Alpha Interferon treatment from
Dr. Allen Ezekowitz at Boston Childrens Hospital Finaly a decrease in size. any
more info Email me at GULFRELIC@AOL.COM
name: Cathy Benson
email: benson1@interaccess.com
We have a 4 1/2 month old daughter who developed
a cavernous hemangioma on her upper lip starting
at two months of age. It grew rapidly and it was
feared it would interfere with her feeding or
possibly obstruct her nose, so she began oral
Prednisone therapy five weeks ago upon the
recommendation of a Pediatric Dermatologist at Children's
Memorial Hospital in Chicago. On steroids the growth has
slowed markedly. The medication has made her more
irritible and hungry, and hopefully we won't have to
give it for much longer. My concerns are whether
growth will recur when we stop the medication (nothing
to do but wait and see) and how much this will
involute in time. Mostly I agonize over how she
will feel about this and deal with it when she gets older.
As her family, we hardly notice it anymore, though others are
very much aware and curious. What is the
best way to prepare a child for living with this
difference?
name: KRISTA
email: malmac@midmaine.com
We have a four year old son that was born with what we thought was a
Hemangioma. It started on the back of his head and grew into his neck and
shoulder. We were told not to worry.
The doctors, some of whom were specialists, told us that it was nothing to be
concerned about and just to keep an eye on it. We did, and it changed and grow
more.
We noticed considerable changes in the color and shape of the growth and it
started getting hard and bumpy. Still they told us "it is normal"
One day eating lunch with my son I noticed that the side of his neck was bulging
out about the size of a small grape. I took him right in to the doctor. They
seemed a little more
concerned this time. One of the docs, who was new took one look at my son and
said "that is not a Hemangioma". Then told us that we needed to go to Boston
Childrens Hospital. So now
we are waiting to find out what is going on. Fearful that our baby is headed
for some scary surgery or horiffic testing.
We have been doing lots of research on this subject and it is helpful to know
that other people are going through similar situations as us. We are not alone.
Krista
Return to page one of the Support Group
GO to page two of the Support Group
GO to page four of the Support Group
GO to page five of the Support Group
Return to BHIS Main Page