Welcome to Birthmarks and Hemangiomas InterNETwork Support Group Page 5

name: Nancy Barravecchio
email: nancy@cyberdata.com
My daughter Mary (who is now 3 months) was born with a slight bruising on her forehead. It progressed to darken and reden by her first week and was misdiagnosed as a stork bite. When it began to enlarge and redden it was then described as a strawberry. By her 2 Month checkup I was then informed that it was a hemangioma, at present I am unsure if it is capillary or cavernous. Although I am leaning towards the latter. As of current the hemangioma is located to the left of her forehead in between her eyebrows, the coloring is now a purplish gray, and has not grown in size for a while now. Unfortunately there is an underlying swelling occuring which is beginning to move and possibly invade her right eye. Along with a secondary but much smaller hemangioma has appeared closer to the same eye. Mary is the happiest baby I have ever known, who sleeps from 10pm till 6am, eats,smiles, and sometimes goes all day without crying. So I have no complaints if this is the hardest we will have to go through. But my questions are these, it seems divided between intervention, does anyone with the same experience have a suggestion. Does anyone have an idea whether the color change is an indication of involution? And lastly is there anyone who knows of a qualified specialist in the Long Island, New York area with whom I can contact? Sincere Thanks Nancy Barravecchio

name: Michael J. Kidney
email: MJKidney13@AOL.COM
My daughter, age 17, has hemangioma on her anterior portion of her tongue. She has undergone laser (YAG) surgery every six months since age four. We would like to hear anyone who has any other treatment which may be more aggressive and last a longer period of time.

name: HILLARY
email: sdbarlow@swbell.net
I have a 10 week old daughter with a strawberry hemangioma on her left side under her it is heart shaped about 1 1/2 in diameter but recently is causes her a great deal of pain she also has angel kisses or stork bite on her forhead and right eye lid that is barely noticeable to anyone but me i am not sure what they will do about her marks they say she will need laser surgury when she is oldler and we commnets all the time when she wears tanks tops shirts

name: Randi Dresner
email: Dresner@worldnet.att.net
my son stephen was born with a hemangioma on the tip of his nose and a large port wine stain on the center of his forehead. He has many sensitivities in his young 16 months so far, allergies to milk and other foods, eczema, etc. We have now come across episodes of his hands, feet lips nose and tongue turning a bluish color and his birthmarks turning even purple. His ped. has ordered xrays and a ped cardiologist has run numerous test. His heart is ok!!! and we are looking into other things. We are not sure if they are related to his birthmarks or not. I wonder if anyone else has had similar experiences? also, have others found that children with these birthmarks are more sensitive to things? I also get asked 2-3 times EVERYDAY since he is born, did he bump into a wall, what happened to him? I know they don't mean to hurt, most are just concerned or curious, but it does hurt me. comments, suggestions are very welcome! he seems so sensitive, also, he had pulse dye laser surgery at 3 months, 3 treatments, I did not notice much change others said they did? We were very unhappy about the doctor, she had no bed side manner, never did any follow-up and only wanted us to continue and to treat his larger birthmark, we felt it was all about money not about him? any one have similar experiences suggestions thoughts? thank you

name: Lisa Peterson
email: lisamp@rsvlonline.net
One of my identical twin sons has a hemangioma on the top of his head that stuck up very high. We had to fight the urge to have it removed but now he is 4 1/2 and has hair that covers it. It is now almost white and has flatten out quite a bit. I always thought of it as God's way of telling the twins apart.

name: Chad Watson
email: Mojomarvin@aol.com
WOW! Who would have thought that there were this many of us! I have never seen anyone with the same condition. I have hemangiomas in groups (red colored)covering about 50-60 percent of my left leg. When I was younger, the doctors told me that they would eventually fade away. I am 33 now, and guess what? They never did. They grew bigger! I lead a pretty normal life, but when I wear shorts, I cover the ones on my knee with a knee brace. Otherwise, people always ask, and I'm tired of explaining. Sometimes they will swell after long periods of standing, and become painful. The one on my buttock swells if I sit for too long. I had dye injected into the leg so that the doctors could xray the veins, and they concluded that it would be too complicated. (Or maybe too expensive for my insurance company??) There is one mass on my knee that sticks out about 1/2 and inch, and is about as big as a quarter around. I played soccer for years, and each time it got kicked or hit, it grew in size. I have thought about taking a pair of scissors to it myself, then they would have to do something, I guess. I know that sounds stupid, but each time I get the runaround, I get more frustrated. Thank you for providing this page, I have new hope from it. I feel for these people who have them on their face, they must be very brave. Be careful what home town doctors tell you, I think that this is a massively understudied area, but hopefully with pages like this, new solutions will be found.

name: Valerie Simon
email: valsimon@aol.com
I am now 39 and was born with a carvernous hemangioma which covered most of the inside of my left leg. It was raised, dark-purple to brown in color, bleed often, crusted in areas and was relatively unknown of in 1959. It became infected many times and it was believed I would bleed and die of hemmorage in the first weeks of my life. Luckily, Neosporin was invented and I survived the many infections. I was taken to several doctors who tried unsuccessfully to treat with dry ice and injections and was told later that it "would go away by itself". It didn't. It grew with my leg and remained extremely painful and embarrassing throughout my life. It would bleed through clothes at times, and removing stuck clothing often involved soaking in baths which would often pull off parts of the hemangioma. (Very painful indeed). I remained active throughout childhood (suffering periodic incapacitations) and lived with thousands of "What happened to your leg?" which was slightl! y better than the people who jus t stared and pointed. By the time I was 10, I met a plastic surgeon (Dr. Grossman of the now-famous Grossman Burn Center), and he decided to wait until I had reached maturity to do reconstructive surgery. At 17, I finally had several major operations to cut out the legions and skin graft the entire area. I was left with what now mostly looks like deep scarring from massive burns and due to the depth of the hemangioma, part of the muscle structure had to be removed. In order not to impair the total use of my leg, it is impossible to remove it all (it is far too deep) and through the years I have had many more minor surgeries to try to keep up with its ever-growing changes. The surgery however changed my life from one of pain (I was practically addiced to codine at the age of 17) and was able to finally do the things which before were too painful (swimming in the ocean, sitting cross-legged...wearing tights and nylons, etc.) Today, it remains lumpy and scarred, however, the! physical pain prior to the major removal has been mostly relieved. It does however, continue to grow and there are very large lumps in the vascular structure and lots of bluish discoloration surrounding the grafts (creeping slowly up my leg). It took well into my early 30's to get comfortable with my leg to wear shorts in public occassionally. My leg is still in need of further treatment and will probably never completely stop growing, however, my life has been full and rewarding and I have never been rejected due to its presence. I have never known anyone personally with a similar type of birthmark and it is very comforting to find an area like this on the web to find I am not alone. There seems to be a lot of information and support here and new treatments which were unavailable back when I was a child. Best wishes to everyone.

name: Paul Boolos
email: pboolos@entergy.com
My daughter Lawren developed a compound hemangioma on her right cheek at about 2-3 weeks of age. We have seen Dr. Waner in Little Rock four times and have gone through the steroid treatments and all the side effects associated with it. I would love to hear from anyone who is in the same boat that my family is going through. Please check out my homepage with various pictures of my daughter (Lawren) through various stages of treatment. The address is (case sensitive) www.geocities.com/BourbonStreet/Delta/2724.

name: BJ
from: Texas
mailto:mbjohns0@airmail.net
location: 1-right jaw,1-front of and behind right ear,and 1-lower right side of neck
I am 27 years old whose first signs of a hemangioma appeared at 3weeks old. All through my childhood, my parents were told to wait it out. My three vascular birthmarks should "go away" on their own by age 9. Well, guess what, they didn't go away. At the age of 15, I had my first and only surgery on the birthmark on my face. The surgery did reduce the size of the birthmark, but by the time I was 18, it was back as big ever. Fortunately, it has not grown any bigger than its "pre-surgery" size. I am a true believer that things happen for a reason. Through unusual circumstances, I met a new doctor who was actually present during a recent CT scan of mine. This doctor talked about treating my hemangiomas with sclerotherapy (injecting medicine into the viens of the birthmarks and safely and non-surgically collapsing the vein). I discussed this with my regular doctor who finally agreed after doing his own research on the procedure and on the doctor, that it was a good idea. Has anyone used sclerotherapy on hemangiomas before? If so, what has been your success rate with it? Is it safe for hemangiomas? I welcome any emails with advice, facts, or just wanting to talk about it.

name: Christine Insell
from: San Jose, CA
mailto:chris@teach.com
location: tip of my daughter's nose
Breanna's hemangioma was visible just minutes after her birth. It appeared as a stripe where the nose meets the top of the lip. It was very very small. Within weeks it grew which was apparent inside her nose on either side of the fleshy middle tissue of the nose. It ran all the way up the tip of her nose. Her doctor was concerned about the location and that the hemangioma may interfere with her respiration. The ped contacted Stanford Children's Hospital ENT doctors and they suggested that we try a treatment at the UCSF Medical Center Dermatology Unit. We were seen by Dr. Ilana Freiden and Breanna underwent 4-5 treatments of cortizone injections. I was a wreck. They would strap by baby in a papoose board, hold her head down and stick a needle in her nose and inject steroids. She was sooo upset. I was sooo upset. This began at about 3 months of age and by the time she was about 10 months old, I decided not to subject her to anymore. The hemangioma wasn't go! ing away. It would subside and then return. However, lately, it seems to be the same size and there is white where they have injected cortisone. My family is really pressuring me to subject Breanna to a laser treatment. I feel that at this point in time surgery is not necessary. The doctors tell me that "typically" by the time she's about 5-7 the hemangioma will disappear. Because of the location of the hemangioma, my doctor tells me that insurance will most likely cover any cosmetic / laser surgery in the future. So I'm going to wait it out. I am not going to subject my child to surgery unless I absolutely have to. I'm proceeding on that it will hopefully go away before she enters school and if she ever comes home crying because she's being teased, I would then at that point consider surgery. It's when it reaches the playground and teasing that her self esteem will be compromised. I haven't done much net surfing on hemangioma's - mainly because for the first year of her life I was caught up on prematurity and congenital heart defects. Now that those issues have subsided I am here to learn as much as I can about hemangioma's and the pros and cons of different treatments. Regards,
Christine Insell
Mom to Breanna Santos
born 2/18/97
expected 4/1/97
http://www.floydsordeal.com/breanna

name: Tricia Brenteson
from: Plentywood, MT 59254
mailto:lena@nemontel.net
location: one on left side of skull(occipital) and the other is 2.5cm deep hemangioma under right eye
Brittany was born 12 weeks early,March 2, 1998, weighing 1 lb 15 oz. . She was in NICU for 9weeks . We did not discover the hemangioma on the side of her head until she was about 7 weeks old. It was about the size of a tip of a ball point pen. Now it has grown to be a little bigger then a quarter and raised up. We discovered the one under her right eye about 7 weeks ago. I noticed she was so 'puffy' under that eye. I mentioned it to her doctor and he said it was positional. We needed to make sure we were turning her from side to side. My husband and I still noticed it and it would get bigger at bathtime. We were scheduled to see her opthamologist (6 hours away) in 5 weeks , so we waited until then. Right away he commented on her lump under her eye. He ordered an MRI of the orbits and the head for the next evening. They are 50% sure that it is a hemangioma , but now we are heading back there for a CT of her orbit and will go from there. If the CT is more conclusive, the doctor will inject it with a steroid. If it doesn't respond to the steroid then we will go to Mayo (Rochester) and see a surgeon. This lesion is starting to cause some problems with her vision, so it needs to be taken care of now. Brittany is now 7 1/2 pounds and doing so good (5 months old) We almost lost her at the beginning , but we have her now. She has been through so much already and I start to wonder how much more she has to go through????? It is so nice to know that we are not alone.
name: cathryn mindel
from: s.c.
mailto:ckdm26@aol.com
location: lower right leg
comment: its very large and bleeds easily

name: Alan Upton
from: Manchester, England
mailto:alan_Upton@Computacenter.com
location: On top of head
My Daughter Emma was only 2 days old when we noticed a small reddish mark on the top of her head. It grew in size and is now about 1.5" in diameter. It does not cause her any pain and due to her hair growing is still visible but seems to get covered up a little more each day ( although hair does not appear to be growing on the Hemangioma itself ) She has not had any type of treatment for her hemangioma as our doctor said it should go on its own by the time she is about 5 years old ( although I am yet to be convinced ).

name: Louise Connolly
from: London England
mailto: louise@delirio.demon.co.uk
location: left inner forearm
My eleven week old son has what we think is a strawberry - heamangiona, but is not yet confirmed by a skin specialist in the Whittington hospital in London next week- august 13th 98 It is very large and covers most of the lower half of his arm-his inner forearm. At birth it was a faint purple mark under the skin much like a bruise indeed on the day I left hospital after a week the paedetritian said it was either a bruise or birthmark. Now as you can see it is unmistakable as some sort of hemangiona or do you think it could be a vascular malformation? H also had very severs jaundice in the first day and for more than 15 days Do you think he could have one on his liver. The hospital could find no reason for his jaundice. He was only 2.4 kg at birth and either 2 weeks early or 4 depending on dates of scan or Lmp. What is your diagnosis and possible treatment if any is necessary and is there any thing you advise me to keep in mind to ask the skin specialist? I can send some photos if necessary.

name: Eileen O'Keefe
from: Idaho
mailto: eileenok@hotmail.com
location: most of left arm and upper left quadrant of chest and back
I am the midwife that delivered this baby and am trying to gather information for the mom and dad. Thanks.

name: Sau Morrison
from: San Antonio, TX
mailto: fen20@aol.com
location: it is on the back of my daughters head, about the size of small grapefruit.
My wife and I were told that my daughter, Taylor, had a hemangioma developing on the back of her head when she was about a month old. Her Ped told us not to worry that eventually the hemangioma would eventually "go away" by itself. It began growing at an alarming rate and we decided to bring her in to get checked out. Thats when we learned that she had delveloped Kasabach-Merrit syndrome. She was on steriods, prednisone, alpha-interpherone, they also tried emblising it. Nothing worked. Her platlet count hovered between 5000 and 10,000 for the longest time. When she was 8 months old, the thing we feared most happened; she developed a bleed into her brain. We were told to make arrangements because they felt that she wouldnt pull through. Well, my little girl proved them wrong! She's 4 years old now and still has the hemangioma and we still have no idea what to do next. We are being told that the best thing to do now is wait for it to involute on its own. Any kind of surgery is out of the q uestion because her platlet count is still below 20,000, that and the size of the hemangioma makes it to risky for fear she couldnt stop bleeding. She is a happy, well adjusted little girl. She is my hero and my teacher. I thank God everyday for that little girl. I hope this will help someone out there and I would love to hear from others of you as well. God Bless all of you. Sau

name: AUDREY SPIELER
from: NEW YORK
mailto: AUDREYS2@JUNO.COM
location: LEFT SIDE OF NOSE AND ONTO CHEEK
WE ARE NOW NEARING THE END OF OUR THREE AND A HALF YEAR ORDEAL. WE RECENTLY TRAVELLED TO LA FOR DR. REINISCH TO REMOVE MOST OF ALEXA'S HEMANGIOMA AND DO RECONSTRUCTIVE SURGERY ON HER NOSE. WE ARE SEEING DR. REINISCH IN TEN DAYS IN N.J. WE ALSO WENT THROUGH THE ANGUISH OF STEROID TREATMENT AND WAITING. WE WERE BLESSED TO FIND DR. BLEI AT NYU TO SEE US THROUGH THE WORST OF IT. ALEXA WAS A PREEMIE BORN 11 WEEKS EARLY. WE ARE EXTREMELY FORTUNATE TO HAVE A PERFECTLY HEALTHY, BRIGHT AND BEAUTIFUL DAUGHTER. IF MY EXPERIENCE CAN HELP ANOTHER FAMILY THEN OUR SUFFERING HAS NOT BEEN IN VAIN.

name: Dena Harvie
from: Nova Scotia, Canada
mailto: pumpkin@ns.sympatico.ca
location: under left eye and on the side of the nose
Caitlin, my daughter, will be 5 years old on Oct 31st. The dark coloring of her hemangioma has faded, but some small spider-like veins remain. She still has a noticable "bump". I was horrified when her birthmark began to appear when she was about 5 weeks old (she was born 4 weeks premature and has had no other health problems). Her eye was watched closely until it was determined that the hemangioma was not affecting it's development. She had 2 cortisone injections when she was 2-4 months old. Since that time she has been monitored by a plastic surgeon. She will be attending pre-school this year, but does not start public scholl until Sep/99. Our last visit to the surgeon was 2 months ago. She has since had a CT scan and the hemangioma is superficial as was previously suspected. It is a capilliary hemangioma. We have been advised that she should have it removed and we would like to have this procedure done and overwith before she begins public school. I have been told that removal with laser therap y is not an option at this time, because the technology is not available. I would be interested in hearing from others whose children have had facial hemangiomas removed. I am concerned that the scarring may be as noticable as the birthmark itself. I am presently trying to arrange a consultation with the plastic surgeon to discuss this matter. However, she's not his daughter and that is why I'd be interested in hearing from other parents who have been through this experience.

name: Victoria Retes
from: Hermosillo, Sonora, Mexico
mailto: jmvicky@hermosillo.net
location: left hand
I have a cavernous hemangioma located in my left hand and part of my arm, well until my elbow. I have had 3 surgeries so painfull I have a lot of scares and the hemangioma still are with me, I was in treatment with injections and I think this is the best treatment they are so painfull but less than surgery. I want to know more about laser. I 'm 39 years old and when was a child the doctors said that it was dangerous the aplication of laser because it could retard the growth of my hand. Here in my town there are some doctors but anyone have experience in hemangioma, also the injections are so expensive. I can use my hand as the people in the main but the scares are awfull and I can make exercise or anything that means have weight in my arms, for example a baby. I'm afraid to have a baby because I know is so dangerous for my hand. I don't know any person that have an hemangioma it was a surprise to found this page. Many thanks, I hope you understand my English, now I'm not feel so alone.

name: Maria Larson
from: Mankato, Minnesota
mailto: glarson@mnic.net
location: Nose
We have been told since a month after Ellie was born that the hemangioma on her nose would probably go away before she started school. She is four years old now and it really hasn't changed at all. My primary physician isn't being very cooperative about referring me to a plastic surgeon so I feel like I'm between a rock and a hard place. I want it removed before she starts school in one year. I just recently discovered that it's not going to go away and I better do something about it. I'll admit, I'm pretty stressed.

name: Daphne Washburn
from: Seattle, WA
mailto: mitsy@blarg.net
location: On my daughters face
My daughter is 6 weeks old and she has a hemangioma on her cheek that is quite close to her mouth. Three different doctors originally told us to do nothing and let it go away on its own. When I asked when it would go away if ever, I was it could be gone by the time she was 2 or 3, another doctor said by age 5, another said age 9. I decided that I wanted yet another opinion and luckily the dermotologist I am seeing now is starting her on the pulsed dye laser. She says there is a possibility that we can greatly reduce the hemangioma. I am surprised about the ignorance of most doctors regarding this procedure. It was great to find this support group to hear other peoples stories and what treatment methods have and have not worked.

name: Laura
from: Dover, DE
mailto: lsilver@dol.net
location: neck
I am 17 years old and have lived with a prominent strawberry hemangioma since I was very young. I have had multiple laser sugeries, cosmetic surgery, and even tried bleaching creme. My parents are satisfied with the results -- I am not. I work at a local ice cream shop and am constantly harrassed with degrading coments, "Is that a hickey? Are the misquitos biting? Did a vacuum cleaner get stuck to your neck?" and so on and so on. The comments never seem to end. However, I have learned to deal with rude people and have accepted their ignorance. Next year, though, I will be heading toward college, new experiences, and even more questions. I just don't feel like I should have to continue explaining or excusing a birthmark when there is so much more to me. I am scarred how people will react and if I will be accepted. Any suggestions.

name: Kurt & Carol Ann Hammond
from: Sandy Utah
mailto: kurt@bardaccess.com
location: upper forehead
Our beautiful daughter is turning 1 years old in a week. We have surgery scheduled in two days to remove a strawberry hemangioma from Bree Ann's upper forehead. After much contemplation, research and prayer we have decided to remove the quarter sized and raised birthmark rather than waiting a potential 7 years or more for a natural removal. If you have any comments as to our decision, pro or con, I would be interested to hear from you.

name: Diane Peterson
from: Jenison, MI
mailto: Randy@wybbs.mi.org
location: right side of face covering cheek and lower lip.
My son Micah is 19 months old was born with a port wine stain. He was diagnosed with Sturge Webber Syndrome at six months, but has had no symptoms of it yet. He has undergone six laser treatments and the results have been great. I would like to hear from persons who live in West Michigan/Michigan area who have children with Sturge Webber/PWS. Also would love to hear from others with PWS, to share their experiences, etc. with me! Thanks!!

name: Sharon Jalbert
from: West Green, GA
mailto: jalbert@alltel.net
location: Left side of face, nasal wall, left sinus cavity, and three in brain
I am a 50 year old white female who was born with what was called a carvernous hemangioma on the left side of my face. It grew as I grew and would swell and hurt if I played, cried or got excited. At age 11 I was kicked in the face and surgery was performed to save my life. I made it through the surgeries but was left scared so was still picked on and pointed at. I suffered with nose bleeds, headaches, and dizzy spells. With no family support I withdrew into a world of isolation. In 1984 a CT Scan was done and three additional hemangiomas were found in my brain. Now I am 50 and new to the internet. I can not tell you how much relief reading about all the research and support groups there are now. Even after my CT Scan in 1984 and the doctors told my husband I had less than 2 years to live, it still was a topic not for discussion in my family. So I hope all who read this understand I am writing to all the parents and families. Listen to those with hemangiomas. You may not be able to see o r even understand the pain your child is in, but believing him/her and not being afraid to talk openly and honestly about the hemangiomas, pains, or fears is the greatest gift you can give. It was my parents guilt and their own embarrassment that made me feel ugly, different, and less of a person. I guess it was their guilt that made them not want to talk about it or accept that I really did have pain. I don't know because it is still not talked about. I thank all of you involved in the research and the developement of this support group because for the first time in my life, I know I am not alone and I know I am not some mental case because I want to talk about it or the pain, and fears. God Bless You All.
Sincerely, Sharon Jalbert

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