Welcome to Birthmarks and Hemangiomas InterNETwork Support Group Page 10

name: Connie Law
from: Hong Kong
mailto: cpslaw@kcrc.com
location: right hip/thigh region
My daugther was born two months ago with a large hemangioma on her right hip/thigh region. The lesion is large about 8cm x 8cm, swollen, warm to the touch, reddish and purplish in colour with a grey halo. I've brought her to see a number of doctors in Hong Kong and all suggest a wait and see approach. Different doctors give different diagnosis. One said it waw a cavernous hemangioma and the other said it was an arteriovenous malformation. I am very worried and I don't know what I should do to help her.

name: Veronica Espinosa
from: Houston, TX
mailto: marimar76@aol.com
location: upper lip
My daughter developed it when she was about a month old. We have gone to several doctors, and they have all told us the same thing, to wait it out. But we can't accept the fact that there is nothing we can do about it NOW. She is 10 months old now, and it does protruce. We love her very much, and will do anything to protect her from the harsh world of comments and pointing fingers. It has been a difficult experience dealing with her birthmark, but at the same time a wonderful experience loving her and just having her in our lives. I pray we can find more answers here. Thank you!

name: Julie Koesel
from: Livonia, Michigan
mailto: julesk73@yahoo.com
location: lower lip
My daughter's hemangioma first became noticable between 1-2 weeks of life. At first, we thought it might be a blister from sucking, but it soon grew larger. It has ulcerated and bleeds when it is bumped. Feeding her is an unpleasant time. Tomorrow we are having her first laser treatment, and they are also going to inject steroids directly into it. She will be 3 months old next week.

name: DAWN H. STANLEY
from: REIDSVILLE, NORTH CAROLINA
mailto: dawnhstanley@yahoo.com
location: forehead
MY DAUGHTER MORGAN WAS BORN WITH A HEMANGIOMA ON THE RIGHT SIDE OF HER FOREHEAD ON 3/14/97. SHE HAS HAD 2 LASER TREATMENTS AND HOPE TO HAVE IT SURGICALLY REMOVED BY 3 1/2 YEARS OLD. IT IS NOT SHRINKING BUT IS LIGHTER DUE TO THE LASER. I WOULD APPRECIATE YOU EMAIL ME ANY NEW INFORMATION ON HEMANGIOMAS.

name: Stephanie
from: Kansas City
mailto: hickeyds@worldinter.net
location: above left eye
comment: 4cm primarily cavernous Born 4-27-99 Any advise on "wait & see" vs. surgery? Not interfering with vision at this time

name: Cate Cullen-Doin
from: Albany,New York
mailto: ccullen-doin@brittonkill.k12.ny.us
location: Scalp and left eyelid
Maeve Doin will have steriod injection/surgery tomorrow on her left eyelid. This is her first treatment.She is six months old. She has a compound hemangioma on her scalp, just behind the soft spot. Her left eyelid contains a deep hemangioma. She has been wearing glasses and patches for 3 weeks.

name: Angela Zozobrado
from: Houston, Texas
mailto: chelazozo@hotmail.com
location: cavernous-vs-strawberry hemangioma on the nose
My daughter is now 4 years old and has had her birthmark since she was born. At six months of age, she was placed on steroid treatment, and her first laser treatment was when she was 18 months. She received 3 ruby laser treatments over 9 months, then we switched to yag laser. While the ruby laser improved the color, the size remained. She also suffered an acute hemorrhage after her first ruby laser treatment. The yag treatment was completely unsuccessful. The point of insertion of the yag on her nose has left a scar to this day. We have been under treatment with a dermatologist and plastic surgeon since birth, and the plastics doc recommended cutting this year. We decided to get a second opinion; I could not imagine trading her birthmark for a large scar. The second plastics doc advised us to wait as long as possible, as involution doesn't usually begin until age 4-7. We are resigned to the fact that this will not "just go away", and now my baby will start k! indergarten next year. I am rea lly considering home school or sending her to a small private school. My daughter is very smart, friendly and outgoing, but I believe being away from the support of family and friends 40 hours each week at school would surely affect her sunny smile. Please write to me if you can identify; I really need support right now. ---Thank you

name: barrie sansted
from: westport,ct
mailto: bb@optonline.net
location: lower lip
my daughters hemangioma has been treated at yale with lasar and injections. it has continued to grow and covers more than half of her lower lip. its now growing outward. im concerned that she wont be able to nurse if it gets much bigger-shes 3 months old. they suggested oral steroids at yale. im now getting a second opinion at nyu. we may try another injection at nyu and then move on to the oral. im concerned about side effects. the drs dont seem able to tell me very much about what may happen in the future. id love to be able to talk to other parents who've been through the same thing. thanks so much.

name: Jean Sirmans
from: Virginia Beach
mailto: luvmysai1r@aol.com
location: lt. ear
Noticed pink spots on ear at birth which quickly developed into large hemangioma on left ear which covers 80% of ear, is blocking the canal but not inside the canal (yet!) She is four months old now and has a referal to see a plastic surgeon at Naval medical center portsmouth on 11/30. I hope they can help because it is large and has begun to split. Havent seen too much info. on hemangiomas of the ear...mostly lip and parotid areas are shown.

name: PBush
from: Atlanta, GA
mailto: shaybaby70@hotmail.com
location: One left leg, foot, and diaper area
My little girl is only 7 weeks old and has hemangioma inside the vagina area, nearly her entire left leg is covered, the inside her rectum and anal canal, and the bottom of her left foot. It appears that it is now spreading up her back. There are also concerns that it is blocking her G.I. tract. There were lesions in the diaper area but I used triple paste and the area healed. I am so afraid because I am being told by physicians that this condition could cause bleeding which could be very deadly if not immediately contained. My family was going on a Thanksgiving vacation to my mothers home. At an office visit prior to this trip, the doctor told me that I should have a physician readily available in my parents home state should she began to bleed. This really terrified me so I decided not to go home. My parents are in a rural area and no such doctor would be available to me. My husband and I are going through total pain for her. We have asked about possible treatment but have been told to just let it be for now. It's so hard to do this as I look at my baby's skin. It causes me considerable pain just to watch this and I need help. If anyone has a child who was diagnosed with diaper area hemangioma and the condition has now been cured, please email with the method of treatment used by you. PB

name: Rebecca Eldridge
from: Rising Sun, Indiana
mailto: rlclark98@hotmail.com
location: Back of neck
Derrick is almost ten months old now. When he was a couple of weeks old we noticed a hemangioma on the back of his neck. I asked his pediatrician about it because I am a young first time mom and a little scared of everyting. He said that it was fine. When he was almost two months old I took him to another doctor in the same practice to get another opinion. He thought I was crazy but later they finally sent him to a specialist. I became infected. It stunk something awful. They had to cut the infection out which meant surgery all because my pediatrician would not listen to me. Now he has to wear a helmet to shape his head because he couldn't lay on that side because of the infection. The plastic surgeon looked the other day to see if there was enough skin to take it off. I am scared but relieved that it will be gone so other children won't make fun of him in school. It is about the size of a silver dollar and sticks out about an inch and a half. Scary but I like being able to find support

name: Vicki O'Brien
from: St. Albans, WV
mailto: sngbird@citynet.net
location: right leg and thigh and lower portion of spine
I was born with a hemnagioma on the calf of the right leg. My first surgery was at the age of 3 months. I have had over 30 operations in my life time with regard to this hemangioma. I had found help through Linda Shannon and she informed me the differences between a true hemangioma and an AVM. As it turns out, I have KT. I am 45 years old and use a wheelchair from time to time, and a cane while in my home. I had been told each time before surgery that I will eventually have to have my leg amputataed. The last surgery was last year and a team of surgeons read all of the information that I took off of this page and a treatment regime that should be followed for an extensive case of KT and today, I still have my leg. Thanks to everyone who is involved with this endevour. Vicki O'Brien

name: Beth Silvia
from: Rhode Island
mailto: BEMJI@aol.com
location: top/back of head
I was told early on that the 'bump' on my daughter's head was nothing to be concerned about. I do not remember exactly when it 'arrived', but I know it was not there right away. At her 18mo. check up the Dr. showed concern and referred me to a neurosurgeon. She is going for am MRI next week and I am just about sick to my stomach over the possibilty of it being something serious. I am confused by the diagnosis because nothing I have read really describes what is on her head. For one thing it shrinks and grows all the time? Well, any support I can give/get tight now would be great. I am new to this problem and am really trying to educate myself on the subject. Thank you;.

name: Rickelle Litten
from: Toledo Ohio
mailto: jrlitten@msn.com
location: under left eye
My daughter is 10 months old. She has a hemangioma under her left eye. Although it doesn't bother her vision yet, it is continuing to grow. The doctor says it may take up to ten years to go away. I worry about her self-estem when she is in school. I have a large portwhine stain on my right cheek. It was terible growing up. Every new encounter was upsetting. I've lived the life she will eventually live. I would like to do treatments of some type to speed up the fading process, although this against my pediatrician thoughts.

name: Kris Kotowski
from: Phoenix
mailto: Sammugsy@juno.com
location: Below right eye on cheek (compound), upper eyelid of left eye (cavernous-very small), stomach
The one below her right eye started around 2 weeks. We thought it was a scratch. We took our daughter into the doctor around six weeks for a slight lump on her other eye. He prescribed eye drops for this eye and told us the other redish marks on her right cheek were a strawberry hemangioma. By her two month check-up, our regular pediatrician said we should have her right cheek checked by a dermatologist because it was too close to her eye. By then, she also had a very small strawberry one on her stomach. The lump above her left eye was pretty much the same. We went to a dermatologist and he put her on the steriod prednisone immediately for the compound hemangioma below her right eye. He wasn't sure if the one above her left eye was a hemangioma. It's been almost four weeks since she started taking the steriod and it's definitely controlling the growth of all three hemangiomas. However, it appears she may be getting a little bit of acidity in her stomach and I'm pursuing getting Zantac prescribed for her. We're seeing an opthamologist this Thursday to determine what impact the hemangiomas are having on her eyesight, if any, and if discontinuing the steriod is an option. We're still not sure if the lump on her left eyelid is a hemangioma. I'm concerned that she should have an MRI to see if there are other internal hemangiomas (some say to check if the child has more than three, others say three or more). Any thoughts out there??? Sleepless in Phoenix

name: June Hartley
from: Connecticut
mailto: jhar105366@aol.com
location: base of spine and down left leg to ankle
I am 36 years old and have been searching for a doctor who can help me with my type of hemangioma. I have been to orthopedic specialists all of my life and have had many operations on my left knee. The hemangioma caused my left leg to grow bigger and longer than my right leg. I had surgery to slow down the growth in my leg. My left leg is still much bigger than my right. It retains a lot of fluid and I am always in pain.

name: Shelia Kleczka
from: Farmerville, Louisiana
mailto: skleczka@woodard.latech.edu
location: base of spine in small of back right above buttocks.
Makalen is my 16 month old grand daughter. She was born with a hemangioma. It is approximately 1 1/2 inches in diameter and approximatl/4 in tall. We are scheduled for an MRI on the 12th of January to see if Makalen has an open spine under this. It has blead only once since she was born. Makalen was eight weeks premature. Dr. Arvind Petal at the LSUMC in Monroe, Louisiana and Dr. Saadat at the same center are the two doctors who have seen her. I hope and prey Makalen doesn't have an open spine and that this can be treated. Mrs. Shelia Kleczka

name: Maria R. Larson
from: Mankato, Minnesota
mailto: glarson@mnic.net
location: In the middle or bridge of my daughters nose
My daughter's hemangioma was present at birth as a tiny red spot on the bridge of her nose. It grew larger and brighter the first year of her life. Our doctor told us it would go away before she went to kindergarten. It became the size of a quarter, and bled twice in her life. We found a doctor in South Dakota who would do the laser surgery with anesthetics. We waited until she was four to begin the treatments. Her hemangioma is now a bruised color. It is raised slightly so it looks like a bump on her nose. She still gets many comments at her intial contact with people. Her self-concept has been harmed- and I'd reccommend to others with hemangiomas on the face to do something right away and not to wait unitl they go to school,. My daughter is five now and will go to school next year. At this point I am unsure how to approach her birthmark. I feel I need to wait now unitl she is older to decide if she wants more surgery.

name: beverley
from: new mexico
mailto: bheims@trail.com
location: 7 hemangiomas in and on the liver
In dec. of 1999, it was discovered through a CT scan, that I had 5 hemangiomas in the liver. I was referred to another doctor, who had me get a nuclear medicine workup, where they discoverd I had 6 hemangiomas. Now I have 7. I have been ad- vised to have radiation treatments, and told there is only a success rate of 50%, and that some of my other organs might be damaged in the process. Needless to say, I am very frightened, and would appreciate any support and knowledge out there. Thanks to all who have been where I am and are able to share your experiences. My doctor has told me I have no choice in having these treatments due to the "symptoms" I am having. Thanks again. Bev

name: theresa lowry
from: richmond,VA
mailto: rock11090@AOL.com
location: right side of head above ear
My chld is a female who is 3 1/2 months old. Shehas a large one on the right side of her head. She also has small ones on other parts(face,back,foot,back of head).

name: Nanette Surber
from: Jax. Fla.
mailto: nansurber@aol.com
location: right side of head in the hair line area right above the ear
When my son was born (7-15-99) he had a growth on the side fof his head. you could not even see his ear!!! i was so scared. the doctors really didn't know what it was. they sent him to u.n.m.c a hospital that handles neo natal problems and more. it took them seven days before knowing what it really was. they thoought it might be avm.birth mark which was really not good. my son was my fourth preg. and he was my only son. they let us go homeon the 7th day. i was really scared. because not only did he have a hemangioma it had torn while i carried him. because it got to be the size of a donut.him not having enough of skin he had a light scab over the centerof it. as the weeks went by it just began to shrink!!!! the scab healed ---leaving a red mark in the center. but it is complety gone in the center(flat) now it just a ring not even a cenimeter thick. at two weeks it measured 71/2 cen. by 7cen. it also began to grow hair over it. you can still see it but people that saw ! it at two weeks think that we ha d surgery and we didn't. i'm just at the point were i'm okay with thins!!! it was the hardest thing i have ever to deal with . i did not start off like everyone normally did with these things. meaning a couple of weeks after birth you began to notice a red spot. then it began to grow. i thought that my son was going to pass. because they were surpised to see it at irth!!! all is well at this point we will see a plastic surg. this month. not to do anything yet just to check on things. i hope things kept going well for you and your family. i wish you all the best if you have any thoughts to add please fell free to e-mail me and let me know....thankyou for sharing your story-- nanette surber

name: Koren Colbert
from: Panama City Beach, Florida
mailto: Colbertcrew@AOL.COM
location: Bottom lip over to her left ear
At birth a slight discoloration was noticed by Katelyn's left cheek in front of her ear. At one week old a bright red line appeared to run along the bottom of her lip line. Over the next few weeks the line got more noticable and her left cheek/ear began to swell. I kept taking her to her Pediatrician, who identified the cause, but kept telling me not to worry, it will go away. Within four weeks of age, Katelyn's left cheek and ear area was swollen to the size of a golf ball, and her entire bottom lip was bright red and swollen. And by this time Katelyn went from being a happy baby to an increasingly fussy one. She was crying, no, screaming all the time. Again, I returned to the doctor, this time I was crying, begging for help, only to be told once again that it would go away, and that Katelyn must have colic. When the nurse asked the Doctor why I was so upset, he replied,"She's just being a Mother." Which infuriated me because, I believed that the situation was causing pain to her, and the Doctor was dismissing the possibility. However, He did refer us to a local plastic surgeon for a consultation. We went immediatley, and the surgeon identified the cause but gave the same advise that it would eventually go away. He did provide us with Children's Hospital in Birmingham, Alabama as a future contact. He advised that they probably would not do anything with Katelyn until she was approximately 18 months old. I stood in this doctors parking lot sobbing on my husband's chest, demanding that these doctors were incorrect regarding Katelyn's discomfort. My husband bought into the doctors explanations and was discouraging regarding calling Alabama at the present time. I called anyway, and found myself with an appointment a few days later and a 600+ mile roadtrip ahead of us, with a baby who was now at this point screaming if she was awake, refusing to breastfeed, and her bottom lip was ulcerating. I had reverted to using Ambesol to numb her lip in order to feed her. Upon Dr. Paul Gardner entering the room and taking one good look at Katelyn, he asked me three questions, and now finally a Doctor knew what I had been going through, and advised my husband that this was going to continue to grow fast and that we had to act immediately with a series of laser surgeries to knock the wind out of its sails so to speak. He also related similar stories of delays in which entire lips have been virtually eaten away by these Hemangiomas. My husband and I began to cry, and cried all the way home. This was a Friday that we returned home, only to return Monday for surgery on Tuesday. Katelyn had six total laser surgeries by Dr. Gardner over eight months. The first one was by far the hardest one. When they handed her to me fresh out of the recovery room I wondered how in the world would she be able to breast feed, but Nature being a wonderful thing interceded. For a time she had no corners of a mouth and feeding became a problem and weightloss followed. She lost a Pound and a half in four weeks. Also , a discoloration is present in the back of her throat and that became a concern for awhile. Katelyn will be two years old May 10th, and I believe the Hemangioma is in the involutional phase now, but not gone.Her lip if bumped while playing will bleed very easily. We have scarring over the entire bottom lip and by her ear. I am eager to have plastic surgery as soon as possible to avoid memory fears and to avoid Insurance problems. I maybe concerned about nothing, but usually I'm not too far off. Something that sticks in my mind is that Dr Gardner said that had we brought her to him week ONE, so much of the damage could have been avoided, but that Doctors in general do not know that there is treatment. We were lucky enough to meet two other couples at the hospital going through the same thing, and that was tremendously helpful. Katelyn is a bright eyed, beutiful, outgoing toddler, who is not afraid of anything, and who loves her family so very much.

name: Katie
from: Macungie, PA
mailto: gkebottj@localnet.com
location: On her forehead right between her eyes
Our daughter was born with a hemangioma with vascu lar componets between her eyes. It is about the si ze of a quarter. Her hemangioma has grown somewhat since she was born. The doctor has stated that she may have a defect in her skull underneath the hemangioma. This weekend we are going for an MRI. I am very ner vous about this. We were told that at this point we are only going to watch it's growth. The doctor stated that laser would not be an option. She would need to have plastic surgery to remove it if it does not dissapear on its own.

name: billie stephens
from: fort wayne indiana
mailto: smilie6007@aol.com
location: next to and under left ear. hemangioma
well my daughter developed a hemangioma when she was a month old it has grown and it is closing the inside of her ear. does it go away? I have taken her to the specialist he tells me it will go away and aslo tells me treatments or removal ideas and the options aren't great considering my daughter is only 2 months old. how do you cope sometimes i just cry because i can't to anything for her. do you have any advice?

name: Felicia Holcomb
from: Coral Springs, Florida (Fort Lauderdale area)
mailto: jholcomb@ispchannel.com
location: upper lip and the skin above the upper lip
My daughter Alyssa is 9 weeks old and she will have her first laser treatment this Monday, followed in 2 weeks by a 9-12 month course of steroids. I am petrified at this whole experience and am having so much trouble coping. I'm especially nervous about the side effects of the steroids but in my daughter's case it was recommended over different courses of treatment. I would be so thankful to hear from someone who has experienced or is experiencing this ordeal.

name: Sabrina Levin
from: Long Island, New York
mailto: Sabrina Bober @aol
location: left thigh
My five-year old daughter has a vascular malformation on her left thigh that has both a vascular and lymphatic component. We have been told that she has Klippel-Trenaunay Syndrome. We feel that although we have been to Boston to see doctors Mulliken and Burrows we know very little as to what we should do. She has not had any major problems and seems to be developing normally. Every summer we do seem to have more frequent bleeding episodes from the several "bumps" she has on her thigh. We have been using bandages that apply a bit of pressure and press the "bumps" down a bit. This seems to help, but we would like to do something more so that we don't have to keep bandages on all the time. We considering sclerotherapy, and would like to hear if anyone has any useful information.

name: Nanette Surber
from: Jax. Fla.
mailto: nansurber@aol.com
location: right side of head in the hair line area right above the ear
When my son was born (7-15-99) he had a growth on the side fof his head. you could not even see his ear!!! i was so scared. the doctors really didn't know what it was. they sent him to u.n.m.c a hospital that handles neo natal problems and more. it took them seven days before knowing what it really was. they thoought it might be avm.birth mark which was really not good. my son was my fourth preg. and he was my only son. they let us go homeon the 7th day. i was really scared. because not only did he have a hemangioma it had torn while i carried him. because it got to be the size of a donut.him not having enough of skin he had a light scab over the centerof it. as the weeks went by it just began to shrink!!!! the scab healed ---leaving a red mark in the center. but it is complety gone in the center(flat) now it just a ring not even a cenimeter thick. at two weeks it measured 71/2 cen. by 7cen. it also began to grow hair over it. you can still see it but people that saw it at two weeks think that we ha d surgery and we didn't. i'm just at the point were i'm okay with thins!!! it was the hardest thing i have ever to deal with . i did not start off like everyone normally did with these things. meaning a couple of weeks after birth you began to notice a red spot. then it began to grow. i thought that my son was going to pass. because they were surpised to see it at irth!!! all is well at this point we will see a plastic surg. this month. not to do anything yet just to check on things. i hope things kept going well for you and your family. i wish you all the best if you have any thoughts to add please fell free to e-mail me and let me know....thankyou for sharing your story-- nanette surber

name: Brenda Nichols
from: Florida
mailto: iamunni@aol.com
location: In and around her right eyebrow, close to eye
Primary care physician wanted to just "let nature take its course" unless it started to interfere with eye function. The hemangioma began right after birth but appeared only as a small, pink spot. When she was about 4 weeks it began its rapid growth and nearly doubled in size, both in length and width. I finally talked her pediatrician into a dermatological consult who referred us to a Pediatric Dermotologist at Miami Children's Hospital whom has had much experience with children's hemangiomas. She's now had two laser treatments (4 weeks apart) and I do think it's doing something, hopefully exactly what it's supposed to be doing. However, she was 2 1/2 months old at her last treatment and either the topical numbing agent didn't work as well, or it's just the fact that she's older, but she seemed to have these kind of "flashbacks" to the very quick but surely traumatic and at least somewhat painful experience. She had several episodes of sudden fear in her eyes w! hen I laid her on her back follo wed by the same piercing cry I heard in the doctor's office. It was a pulse dye laser (something I've never had). The doctor has compared the pain to an immunization, but I would very much like to know if anyone here truely knows how bad this hurt Christine, physically? It has now been 5 days and she's definately better. No fearful episodes at all today. She's scheduled for another treatment in 4 weeks. Can anyone out there offer any info or advice? Thank you. Brenda D. Nichols

name: Heather Thornton
from: Carrollton, GA
mailto: Rovgram2
location: face and internal
My daughter Haley has hemangiomas on her face, in her intestines, around her trachea, on her liver, and up against her brain stem. The hemangioma in her intestines causes her to bleed through her stools so she has to have frequent blood transfusions. The hemangioma around her trachea caused the doctors to have to do an emergency tracheostomy when Haley was two months old. Haley takes steroids and interferon. When Haley was only a month old the doctors told me that she would never leave the hospital alive but she did. After two and a half very long months in the hospital the doctors released Haley. Haley is now nine months old and doing very well. She still has her trach but the hemangiomas have begun to shrink. We still have to take her to see her ten doctors frequently but now they are hopeful that Haley will be okey.

name: Kim Hedeen
from: Eugene, Oregon
mailto: kimojack35@aol.com
location: inside the right calf
I was diagnosed with a Hemangioma when I was 18. I am now 37. At the time I was told, that it would probably not grow and should get smaller. I have been told numerous times that they can't understand why it even bothers me. I have lived with what I considered a sore leg and leg cramping at night for years, there are times in the morning that I have to hop to the shower. Until recently it would maybe only bother me every 3-4 months, I would then wear me leg stocking and it would go away until the next flare up. A couple of months ago it has started bothering my constantly, to the point it wakes me up several times a night. I had a MRI done and my home doctor's words were "It has grown tremendously." He has sent me to a specialist that once again says there is nothing he can do for it. Surgery would be too destructive and injections are too chancy... Basically I was told to come back when I can't walk and then he would consider the injections. (Hopefully that! day will never come) I am tire d of the throbbing at night, constant pressure and soreness. Anyone have any ideas???????

name: Renee Em
from: San Francisco
mailto: ReneeEm@aol.com
location: right eyelid
Hi. My 10-month old daughter is having a second growth spurt of the hemangioma over and under her eyelid; it also goes into the white of her eyeball. I am now facing the choice between oral steroids (which she was on from months 2-4) again, or injection (which she has never had). The hemangioma got a bit smaller between months 5-7, but has since grown again (though the color is no longer bright red, but rather a grey-purple. It seems the external part is somewhat better, but that it may be growing more internally...as there is a red bumpy mass inside the white of the eye which didn't even exist in the earlier phase. My pediatrician has also recommended an MRI, which also frightens me since she would apparently need to be anaesthetized. These decisions need to be made soon, and since she is a twin, I have little reflection time! Any feedback would be helpful. I'm concerned about resuming oral prednisone, since she is still quite small (she was also premature), but I'm also concerned about the risks of injection. Also, does anyone know if there's a way to do an MRI on a baby without anaesthesia? By the way, I've been eyepatching the good eye for an hour daily, which the optomologist says is the best way to prevent stimatism (though she already is somewhat stigmatic). Thanks so much, Renee

name: Sandra
from: Wisconsin
mailto: zagh1@aol.com
location: upper left cheek close to eye and nose
at 2 weeks we noticed a little red mark next to my daughter's nose. My doctor explained that it looked like a hemangioma and said that it would grow larger. I never in my wildest dreams she meant as large as a tennis ball. This purple and red lump started to encroach on her eye and push over her nose. Fortunately it did not impede her sight or breathing. Following the recommendation of our ped. and the specialist we let it run it's course. It was at it's peak size by 8 - 10 months. It plateaued for about a year and then slowing began to shrink. The color disapated before the mas. Although it shrunk greatly it was still an obvious mas on her face. She experienced all frustrations of teasing once she started school. She is a strong and confident child. At age 10 after no real change over the past couple years we were referred to a cranial facial plactic surgeon at Children's Hospital. We were told he had a national reputation and was truly the best. My dau! ghter underwent surgery. Ther s urgery lasted 7 1/2 hours. She stayed one day in the hospital. Recovery was hard. The mas is gone however we are experiencing some scar tissue that is stiff and is pulling the lower eyelid down. (the surgeon went in through in incision under her lower lash line to keep noticable scars at a minimum) Now after almost 6 months the surgeon believes that we may have to go in for another surgery. My daughter is scared to undergo that terrible experience again not to mention the recovery. Although my brain tells me we are doing the right thing my emotions are full of doubt. The logical me knows that we are with the best surgeon for the job and when this is all over it will only be a faint memory and my daughters future is bright and beautiful. However it doesn't stop me from being scared and impatient and tearful. I welcome any others who have gone through the surgical experience to share. I know success stories would be great for my daughter as we possible prepare for surgery #2.

name: Monica and Russ Walsh
from: Pittsburgh PA
mailto: mwalsh@mercy.pmhs.org / walshr@duq.edu
location: left upper arm and left eyelid
Anna was born on Sept 18 1999. At the time of birth a mark was apparent on her upper left arm but the doctors weren't sure if it was a bruise or a birthmark. After a week or so it was determined to be a hemangioma. Within a few weeks, she developed a mark and a swelling in the center of her left eyelid that later was diagnosed as a hemangioma. Initially we were told that we should just wait until involution, but the mark on her arm ulcerated in a few places and seemed to be painful for her. Also we are concerned about the mark on her eye (currently it doesn't block her vision, but the eye doctor says she has a slight astigmatism in that eye). We brought her to the pediatric dermatologist last week and she recommended oral prednisone and laser treatment (for the arm). She's been on the prednisone for about a week now and we are in the process of scheduling the surgery. We hope it will help. I'm wondering what treatment options there are for the eye if the ster! oids don't help.

name: Kimberly Diamond
from: Ohio
mailto: KKSUED@AOL.COM
location: Forehead,left upper side of face, across whole entire eyelid & above
She is 9 yrs old.Has had 6 lasar trtmnts since 6 mos of age. 2-1-00 we have now found out she is blind in this eye.Myself? I have slept 3 hrs since our visit & it is now 2-3-00; 2am

name: Robyn Williams
from: La Porte, texas
mailto: user906499@aol.com
location: nose bridge
My daughter's birthmark is located on her nose bridge. Unfortunately, her's ruptured when she was around 6 weeks old and required laser surgery. Now she is 16 months and it is beginning to turn white and it is beginning to involute slowly. We are exploring removal options currently. We are very concerned about scarring that surgery may leave.

name: Linda Dixon
from: Perth, Western Australia
mailto: mldixon@tower.net.au
location: On the side of her right eye
Our daughter Carly's hemangioma started to show at about 10 days of age (January 98) and just kept growing and growing and growing. It finally stopped around 10 months of age when it was about 3cms(1¼ inches) in diametre and raised about 1.5cms (over ½ inch). Being a brilliant blood red colour and so prominant, people naturally noticed and stared. People have made blatant comments to her and to us but when she smiles they don't notice it anymore. Her whole face lights up like a beacon. She has just turned two years old. Her "special mark" or "mark" as we call it shrunk for about one year but has stopped. We have been told by our Dermatologist that it won't disappear completely which we have accepted, but we are prepared to have it surgically removed, if warranted, by a plastic surgeon before she starts kindergarten or pre-school (4 - 5 years old). Our family, friends and acquaintances don't notice it at all. Her older sister by 12 months has made it bleed once! or twice when fighting where it usually bleeds copious amounts in a short space of time. Kids stare and are inquisitive but that's kids. Any rudeness we've had have been from adults saying "Excuse me, your child's got a lolly stuck on her face" or to the lady who obviously couldn't have had enough looking and actually grabbed hold of and stopped my pram so she could get another look! My daughter plays with her "mark", pulls it, yanks it and fiddles with it when she's tired. And plays "now you see it - now you don't) with her "mark" and mine - a small mole on my right cheek. I tell Carly that everyone has a "special mark", some on the outside and some on the inside. But the really special people have it in a place so everybody can see!!!

name: Allison Dady
from: Austin, Texas
mailto: sadady@juno.com
location: Back, spinal area
When Reed was born, 8-28-99, he had several, very fine, veins that seemed to be just beneath the skin's surface on his spine and he also had a skin tag just below that area. Over the next several weeks his hemangioma appeared over the same area as the veins. It is about an inch and a half long, resembles the shape of a band-aid and is located horizontally over his spine. He also has Occult Spina Bifida, including a tethered spinal chord. (The chord is tethered under the skin tag, which has since fallen off and left a small scar.) A pediatric neurosurgeon was called in at birth because of the location of the skin tag and an MR scan was performed. We did a follow up MR scan at 3 months and discovered a tumor close to his diaphragm and growing into his spinal chord. His oncologist felt it was a neuroblastoma because of his age and the location of the tumor. He had surgery to remove the tumor 1-11-00 and has recovered beautifully! We came to find out that the tumor was not at all a neuroblastoma, but instead it is a vascular tumor/hemangioma. I am now concerned that since we removed this tumor instead of letting it regress on its own that it may grow back. We have an appointment with his surgeon and also with his oncologist 1-27-00 to discuss possible future complications. Any similar situations or thoughts out there?

name: Min Li
from: 6631 Town Court North, Lawrenceville, NJ 08648
mailto: mli4@lucent.com
location: on my son's face
It didn't show up until he's one week. At first we thought it was a little scratch. It grew quickly in the first three months then slowed down after he's four months. The mark is now roughly the size of a nickle and 2 mm high. We asked the doctor for a referral but the doctor refused and was very sure that the mark would go away after a few years. So we're just watching it. But it's really not easy for a mother. I don't know if I'm doing the right thing. Any of your advice will be highly appreciated.

name: June Hartley
from: Connecticut
mailto: jhar105366@aol.com
location: base of spine and down left leg to ankle

I am 36 years old and have been searching for a doctor who can help me with my type of hemangioma. I have been to orthopedic specialists all of my life and have had many operations on my left knee. The hemangioma caused my left leg to grow bigger and longer than my right leg. I had surgery to slow down the growth in my leg. My left leg is still much bigger than my right. It retains a lot of fluid and I am always in pain.

name: Barbara Vincent
from: San Francisco, CA
mailto: bvincent@goldengate.org
location: back of left shoulder
Francine was born in October 1997 with a "bruised" area on her left shoulder. We didn't realize it was actually a hemangioma until she was two months old and our pediatrician noticed and identified it at her two-month check-up. He immediately had her blood tested, and she was revealed to have low platelets (150,000). She was diagnosed with Kasabach-Merritt syndrome. She had a series of hospitalizations over the next six weeks and received the following treatments over the next year: prednisone, massive doses of IV solumedrol, platelet and cryoprecipitate transfusions, interferon 2a injections, six embolizations, and two courses of Vincristine, a chemotherapy drug. She also had to have a central line put into her aorta, leading to the outside of her chest, in order to do blood draws and receive IV's. All of her IV sites were so bruised that they could no longer be accessed. She had the Broviac catheter until this past June. It broke and had to be replaced twice; finally broke in June 1999 and was pulled out. All of this time her platelets varied between less than 5,000 and 100,000. Treatments would drive them up, then they would fall again. When she was 15 months old, on her second course of Vincristine, her platelets went up to 150,000, then 200,000, then 450,000. They stabilized around 400,000. I am writing this in hope that other parents with a child with Kasabach-Merritt syndrome, or with a hemangioma, facing these kinds of treatments might benefit from our experience. If you have questions about our experience with the treatments or procedures I listed, I would be happy to share information. March 2000

name: s strausslon
from: london
mailto: sim@sstrauss.fsnet.co.uk
location: on face
PWS on facce present at birth 18 laser treatments so far, she is 6.5 years old

name: Carol & Paul Carolan
from: Rochester Hills, Michigan
mailto: ccarolan@juno.com
location: Jennifer's throat
Jennifer was born 6 weeks prematurely. No hemangioma appeared until she was 2 weeks old. At first it was just a small dot about the size of a BB. Today, at 10 months, Jennifer's birthmark is silver dollar sized. It is starting to involute (graying) in patches. Because of it's location, the summer's heat and friction caused the birthmark to ulcerate last summer. Keeping the area clean and bandaged was a major chore when you're dealing with a 4 month old who enjoys dribbling milk in the area! We found applying Second Skin by Spenco, a product used to cover burns, helped reduce the inflammation and aid in healing the ulcerations. Currently, her doctors agree to wait and see if the hemangioma involutes on its own. No treatment has been prescribed.

name: Sophia Papadopoulos
from: San Jose, California
mailto: beb02@juno.com
location: Left side of face
I am the one with the hemangioma. I am 17 years old and living with this since I was born. I came from Greece with my family when I was about 14 month's old, in order to find treatment for my condition. I just came across this website and I thought it would be nice to chat with someone that has the same condition and can understand what I am going through. I hope you e-mail me back so we can chat in more detail. Thank's. Hope to hear from you soon. Bye!

name: Holly Griffin
from: Maryland
mailto: holly@zxmail.com
location: Right Arm
Hi. I am not sure if I'm too young for this group, but I am 15 years old and I would like to share my "birthmark experience". I have a birthmark that covers my entire right arm from top to bottom (all except on the underside of my arm). It is red, and it looks like a bunch of tiny dots that are on the surface of my skin. There are a few light purple small veins (possibly veins, very tiny blood vessels?) too. It has gotten much lighter since I was a baby, as it used to be blood red and slightly raised. However, I really dislike it. I rarely wear short sleeves to school because of it (even in the warmer months), and I am afraid to wear swimsuits as well. I am so ashamed of it, and I am afraid that people are really disgusted when they see it and it is affecting my social life. I am sure people talk about it behind my back. After all, if it were on someone else I would be a little disgusted by it too. It looks like a giant rash. And what really upsets me is when I wear short sleeves to school and someone comes up to me and says, "What happened to your arm"? Nothing happened to my arm. I am so ashmed of it and sometimes I think that no guys will go out with me because of my birth mark. Is there some way in which I could get it removed or at least lightened? Concealed? I hate it so much. I asked my mom if I could get it removed, and she responded as if she thought I was out of my mind. "Why would you ever do that"? Gee, only because it has ruined my social life and drained me of any and all of my self-esteem. It makes me feel so ugly. Please help. Also, are there any surgeries available for this type of birthmark? What do the surgeries invlove? Thanks so much for listening to my story.

name: Molly
from: California
mailto: Alohamolly@aol.com
location: nose
My daughter is 3 1/2 months old with a mixed hemangioma on her nose. We are in the process of deciding what kind of treatment to pursue and anyone's advice is welcomed.

name: Patsy Hart
from: Phoenix
mailto: willow@cybertrails.com
location: face and neck
it's not my childs , it's mine I am 40 years old and I was born with a very light red spot on my face and neck and as i got older it got much bigger and darker, about the size of my hand, but it's flush with the skin not above the surface , and it has reoccuring capilaires. can you give me any advise. i have tried almost every laser possible, pulse dye, coppervapor, argon, and one that caused brusing, the yak or yag lazor and i still have it. my name is patsy

name: Ja net Penick
from: Louisville, Kentucky
mailto: jmp@rawlingscompany.com
location: Left cheek, left upper lip, inside of mouth
I am 46 yrs old and was fine at birth except for what appeared to be a bruise on my left cheek next to my nose. My first surgery was at 3 months old and had 2 more before turning 1 yr old. My hemangioma grew as I grew so I have had over 35 to 40 surgeries to date. I have never given up on my attempt to "look normal" and except for a few scars, I think I do. I just had another surgery last Wednesday for scar revision and removal of residual tumor inside my mouth. My surgeon is Dr. Gerald Verdi in Louisville, KY. I would recommend him to anyone seeking help for their child. He is a great and wonderful doctor. I also used another doctor at the University of Virginia in Charlottesville, Dr. Milton Edgerton, a few years back. I would also recommend him for the treatment of hemangiomas. I was very happy to find this website today, it has given me comfort since I have been pretty depressed lately when I look in the mirror and my face looks like a roadmap. (30 stitches from the surgery.) I sometimes question why I continue to put myself through the pain and anquish. The healing process has always been slow and agonizing, always wondering if it will turn out OK. Up to now, I have been very lucky and I thank God. I have had GOOD doctors. I was entered in a yearly plastic clinic sponsored by Kosair Charities, by my very first doctor, Dr. John Weeter, Sr. This fantastic organization helped my parents financially. All my surgeries from about the age of five were funded by this organization. I guess it was something like Operation Smile. There were all kinds of other children there with various kinds of birth defects. (I really hated going to that clinic.) But, it was a "Godsend" for me and my family. As we all know, medical treatments for hemangiomas is expensive. Thank you for allowing me to share some of my experiences. I hope it can be helpful to someone else or someone's child. This has been helpful to me and I thank you and wish you all the best. Sincerest regards, Janet

name: Holly Grafton
from: Allentown, PA
mailto: ryangrafton@juno.com
location: front of the head, right above hairline
Wow, was I ever glad to find this support group! I had no idea hemangiomas were this common! My 8 month old daughter, Mattea, was born looking perfect in my estimation. She was a little scaly on the front of her head when I brought her home, and so I brushed her hair with baby oil for a few days. I became very alarmed in the next month when a little red mark began to bubble out. I was terrified that I had caused it. At her first immunization I asked the doctor about it. He did not seem too concerned and told me the famous words many of you have heard, "Wait, it will go away." I figured this meant a month or two by the way he sounded. When my family expressed some concern that it was getting bigger, I asked again at the next checkup. The second and third doctor in our practice said it would eventually go away. The last mentioned at her 6 mo. visit that I might want to take her to a children's hospital to have it checked out to make sure. My husband and I have! decided to wait. I am holding on to hope that it will involute in a year or two and that she will have no problems. From reading some of your stories I realize my daughter's hemangioma is not that big--about the size of a nickel, but quite raised and red and she is fortunate to have it where hair will cover it one day; however,I am sick to death of answering questions about it, and I try to hide it with a hat or headband when we go out. I notice people look at her different when they can't see it. When they can, it's all they see. She's a beautiful little girl. I do wonder if we SHOULD do something about it. I don't want her to deal with a bloody head everytime she accidently hits it while brushing her hair someday. I don't want to treat it with medication after reading some of these stories. I know my family worries about it everytime they see her. Any advice? Should I take her to a children's hospital and perhaps see about removal? I'd love to hear from you! Thank you!

name: VLAERIE
from: COLORADO
mailto: VMONCA@AOL.COM
location: LEFT SIDE OF CHEST, DOWN LEFT ARM AND UP THROUGH HER NECK DOWN THE BACK OF HER NECK.
MY DAUGHTER IS 11 YEARS OLD AND HAS A HEMANGIOMA ON HER LEFT SIDE OF HER CHEST, DOWN HER LEFT ARM AND UP THROUGH HER NECK DOWN HER BACK. THE DOCTORES IN OUR TOWN HAVE NEVER SEEN THAT BIG OR THAT DEEP OF HEMANGIOMA ON A PERSON BEFORE. SHE HAS HAD LASER SURGERY TWICE. ALL THAT DID WAS LIGHTEN THE COLOR. THIS HEMANGIOMA IS VERY DEEP.IT IS CLOSE TO HER HEART. THE DR. IN MY TOWN THOUGHT THAT THIS WOULD TAKE HER LIFE. I HAD TO TAKE HER TO A DR. AT CHIDREN'S HOSPITAL IN DENVER. HE SAID THAT THIS TYPE OF HEMANGIOMA IS DEEP BUT IT WILL NOT TAKE HER LIFE. SHE WILL HAVE DICOMFORT THE REST OF HER LIFE AND THAT SHE MY NEVER BE ABLE TO HAVE CHLIDREN. HER BIRTHMARK SWELLS UP AT TIMES WHEN SHE IS VERY ACTIVE OR IF SHE HAS A COLD. SHE GETS A KNOT UNDER HER ARM AND HER CHEST. I HAVE TO RUB IT AND APPLY HEAT UNTIL THE SWELLING GOES DOWN. I LOVE MY DAUGHTER SO MUCH THAT IT HURTS ME TO SEE HER IN PAIN. I HAVE SO MUCH FAITH IN GOD. THE POWER OF PRAYER IS WHAT WHY MY LITTLE ANGEL IS STILL WITH ME. I HAVE RESEARCHED THIS TYPE OF BIRTHMARK AND FOUND THAT THERE IS NO CURE. I LET THE DEAR LORD TAKE CARE OF HER. SHE LIVES LIFE TO THE FULLEST. I DON'T HOLD HER BACK. I KNOW ALL THE PAIN THAT OTHER PARENTS FEEL BECAUSE I HAVE THAT PAIN MYSELF. BUT WE DEAL WITH IT WITH THE LORDS HELP.

name: Cheryl Nein
from: Columbus, Ohio
mailto: randy.nein@gte.net
location: left side of head, neck, and chest
The only thing normal about Mackenzie's hemangioma was how it appeared. It showed up 2 weeks after birth and was described as a port wine stain. During the next couple of weeks she started developing a problem breathing. After several trips to the doctor we were admitted in the hospital and found out that her hemangioma was considered a large life-threatening hemangioma. It starts at her salivary gland, wraps around the jugular, aorta, trachea, and esophogus, goes down the back of her lungs, and heart, and goes into the epidural space of her spine. It grew out of control for about the first 5 months. Now at 16 months of age, it is still growing, but not as rapidly. She has been on steroids constantlly since she was 4 weeks old. She also takes shots of intrferon every night. We have luckily avoided a tracheostomy, and surgical removal is not an option because of its size and location. This is only the tip of the iceburg of what we've dealt with in the past year, but I'm here to say that now 16 months later I feel totally optimistic that the worst is behind us, and that we can face anything else that comes our way. Our daughter's outside appearance isn't that bad. She has a purplish colored birthmarkon her left cheek, head, and ear that is mostly covered by hair. If anyone just needs someone to talk to, feel free to contact me. I've been there.

name: Michelle Schultz
from: Blairstown, New Jersey
mailto: jms13@worldnet.att.net
location: nasal tip and right cheek
My daughter Madison is now 3 months old. She was 2 weeks old when the birthmark on her right cheek started becoming very noticable. It wasn't until she was over a month old that the one on her nose became apparent. It started out looking bruised and has since grown now to the size of a large olive, with also a strawberry mark on top of it. We are having the one on her cheek treated with laser, but the nasal tip we have tried cortisone injection and were unsuccessful. The doctor now wants to try oral med's but we are very unsure because of all of the side effects. Can anyone give us input on this??

name: Steve and Lisa Hedges
from: Tulsa, OK
mailto: hedges331
location: entire upper eyelid
Katy, born 1/12/99, developed a hemanagioma from 2wks(pink) to 9wks(huge) that engulfed her entire eyelid from lash to brow-nose to temple. Superficial and carnevrous the mass swelled her eye shut. At 9wks she was put on oral hydrocortisone which did stop the growth but did not help her to open the eye. The next four months were a "wait and see". During that time she lost the sight in that eye. At 30 wks injections were given and within 2 days!! she could open her eye. The bad side effects were worth the results. We began patching(24 hours a day) to force the blind eye to work. Force is the right word. Keeping a patch on an 8 month old which throws her into darkness is not at all easy. But miles of tape and tears later she can see with that eye. At 14 months the hemangioma is deep purple and grey with signs of improvement each week. We have alot to be thankfull for. Katy is happy and very determend baby. She will make it through this ordeal, but I am not as sure about me. The guilt is overwelming. We moved to a new town when Katy was 4wks old. Found a new ped. at 8 wks. I had to beg for an appointment with the nurse praticioner in 7 days because the doctor did not have and appointed for 32 days. "But we will schedule you with the nurse on a day that the doctor is in so he can at least see the problem." Gee Thanks!!! The ped. saw her and said "she needs to see a dermetalogist because it is a skin problem. And see them soon" The derm. said (even before seeing her) "she is too young for me to help, go see a plastic surgeon" Two days later(she can not open the eye now) the plastic surgeon via the telephone, says "Oh she is too young for me to do surgery on, go down to the hospital for a steriod injection." That night the hospital said "We can not give her an injection, that needs to be monitored by a doctor!" 10 Days later a plastic surgeon (who was great but conservative) started the oral steriods but did send us to an eye doctor to monitor her vision. That eye doctor sent us to other one. This ped. eye doctor and surgeon would say at each visit "I am on your team, this is the best we can do" The third eye doctor at first said "when you see the plactic surgeon again..." Thats when I said "He is taking your lead!!! because you are suppose to know about the vision." He called both the other doctors that day and 2 days later she had injections that worked. I still battle with the quilt of 'if only I had spoke up sooner'. Since then I have found this support group and do not feel quite as helpless. It is so hard on a mom, or any loved one, who can not make it better with a kiss.

name: Anna MacInnes
from: Scotland U.K
mailto: a.macinnes@abdn.ac.uk
location: left upper eyelid
Isla was born 7 weeks prem. Soon after her birth I noticed a small red mark beside her eye. I was told not to woory as it would go away by itself. The mark grew and by 6 weeks of age the haemangioma had covered the eyelid and had swollen so much she cannot open her eye. She has had to sets of steriod injections into the eyelid with little effect and we are now looking at other treatment options. Laser treatment has been ruled out due to the haemangioma being to deep. Isla is now 8 months old.

name: Sabrina Meilleur
from: Winnipeg, Manitoba, Canada
mailto: smeilleur@home.com
location: Above the right side of my lip.
Unlike most cases of hemangioma, I first noticed a bump above the right side of my lip when I was 7 years old. It was looked at by serveral specalist and the lump was surgically removed when I was 8. The doctors never could figure out what they removed... Unfortunatly, it grew back. For a girl in her teens, it's not the greatest thing to have a deformaty on her face... although people said it wasn't noticable, i knew it was there. In april of 2000, at age 19, I had my second surgery, it went rather well, and I'm doing even better than the doctors could have imagined. I just got the diagnoses of what the bump was - hemangioma. It was such a relief that I finally knew what that bump was. Doing research on the web has given me such a wonderful feeling to know that I'm not that only one who has gone through this. I would love to hear from anyone who has hemangioma, or their son or daughters do. my email address is smeilleur@home.com

name: Maria Lappin
from: Roseville Michigan
mailto: GR8WEST@AOL.COM
location: On bottom left eye lid.
My son Noah Lappin was born 4 weeks early. He had what we thought was a port wine stain on his bottom left eye lid. About the 4th week of his life the stain started to swell and began to block his vision. The bigger this mass got the faster it grew. He was started on oral steriods which seemed to stop the growth and hopefully shrink this mass. It stopped growing for about 2 weeks then started to grow again. At this time the doctor doubled his dose of steriods. Two weeks later since the mass had not shrunk the doctor started injections. He has had 2 injections within the last 5 weeks and has not had any shrinking. There is an ulceration in the middle with another ulcer starting to form next to the first one. He has been weaned off of the oral steriods just within the past week. He is a great natured little man with no other health problems. He is eating good, gaining weight, and sleeping great! If you can give me any information on what comes next please contac! t me. Thank you for listening. Maria Lappin 26811 LaSalle, Roseville MI 48066 (810)7714290

name: Diane Adams
from: Coudersport, Pennsylvania
mailto: theadams@adelphia.net
location: Soft pallett, uvala, Tonsils, Adnoids, stopping above the vocal cords and 1/4" from the brain stem
My son who is now 13 was diagnoised with a cavernouse hemangioma of the soft pallett and hypertonia when he was 6 wks old. The hemangioma continued to grow slowly and finally when he was 3 years old, it had to be removed for it was seeping and after an alteriorgram it was discovered that it was being directly feed by the arteries in his neck. Dr. Parker from the Portsmouth Naval Hospital removed it with lasors. A surgery that was expected to take up to 20 hours lasted 2 for the hemangioma disintergrated with the first lasor cut. All was not able to be removed, especially from around the estation tubes. He still has tubes in his ears. From the time he was 18 months old to 24 months old he was monitored for high blook pressure and did have a MRI of his liver finding nothing. 10 years later, in trying to find a cause for his migrain headaches, a tumor was found in the middle of his brain and the drs say this was also present at birth and told me not to worry about! it. He is on daily medication for his migraines. He also sufferes from "mysterious pains" in his chest and stomach that come and go. We live in a small town and the doctors do not take me seriously. Our ENT will not touch him except to monitor his eartubes. He is LD, but otherwise appears to be a normal healthy boy. I am begining to think that I am just being silly and parinoid. My maternal grandmother had a hemangioma in her lung and I have several second cousins on the same side of the family with hemangiomas as well. None of us cousins have been looked at. I have a small strawberry in my scalp. My 3rd daughter has a small tan strawberry infront of her one ear that changes colors when she gets upset. I don't know if I should be concerned over my son or listen to the doctors here in town.

name: Tara Bradley
from: Brooklyn, New York
mailto: babybiu79@aol.com
location: center of forehead, right between the eyebrows.
My son is barely four months old, and his hemangioma showed up at about 2 months of age. It started as a blue mark that resembled a vein, and now it is larger than i'd say a large grape. I've read alot of the websites, and recieved a large amount of the information that i couldnt get from a doctor. I took him to several different types of doctors and i've heard several different stories about what it could have been. I finally panicked when the growth of it started to speed up, rapidly, and forced the doctor to give me a prescription for a sonogram. His pediatrician said that it should be removed, and now i'm seeing that its not as cut and dry as that. I have seen some of the other pictures people have sent in and my heart goes out to each and every one of those parents. I am a new mother, and i think i am only begginging to feel what they have been going through. I have alot of questions about the birtmark, like, what is the usual rate of growth, and is it supp! osed to increase as time goes on ? I'm not even sure of the questions i'm supposed to be asking. If you think you can help me, please email me. Thank you for taking the time to read this. Sincerely, Tara Bradley

name: Cidália Dias
from: Algarve - Portugal
mailto: ciflor@mail.telepac.pt
location: left face and lips
She was born eighteen years ago with a hemangioma visible since she born. Was more visible near the ear, where she had a protuberance and some little blood marks on the left face. The doctors said that "maybe" with the time it will disapear but it allways changed but never disapeared. Then it beganned to appear on the lips, first the upper than the other(the left side only) than disapeared from the ear and in the last years the protuberance is more visible under the chin.She used a pressure mask, she did embolization. Now she has eighteen years old, she feels very unhappy to be like that and we would like to do the best. The last time she did a angiography the doctor said that now she could do a plastic cirurgy. I would like to know the best place to treat her, if the Social Security can afford it or how much it costs.

name: Audrey Book
from: Stephenville, Texas
mailto: audrey@eaze.net
location: lip
My daughter was born with a red mark on her lip that began growing rapidly at about 3 monthes. No doctor would treat it saying it would go away on its own. It was so hard to find information on the subject. At 12 monthes it seemed to be at its biggest and now seems to have stopped growing but it is hard to tell if it is shrinking or not. After hearing some stories I am afraid of what treatments to ask for and would appreciate some advice. We are constantly stopped by stranger who are apparently so shocked by her lip they feel compelled to comment. Ever family has been less then sensitive and we have had a real lack of information to inform them. We are just waiting to see what happens from her and would appreciate any email from other families with children with hemangiomas.

name: Tifany Stapleton
from: Payson AZ
mailto: ssassy_00@hotmail.com
location: left upper eye lid
my daughter is now 9 months old and she is being seen by a specialist. i have a lot of questions and wrries about my daughters hemangioma. The docter said that she will need reconstructive surgery because it has dropped her left eye about one half of an inch. like i said i have a lot of questions i dont know how to help my daughter deal with this in the future. everyone always askes about it now, what is it going to be like when she starts going to school.

name: Vicky Bennett
from: Brewer, Maine
mailto: e-moo@msn.com
location: left cheek
My daughter developed a strawberry hemangioma on her left cheek when she was two weeks old. She is now 3 months and the hemangioma has continued to grow. It is about 1 inch wide and 2 inches high. Her cheek is blueish in color. She has not had any treatment. Our doctor does not feel treatment is necessary at this time. It just breaks my heart to see how people look at my beautiful daughter and all they see is her hemangioma.

ame: Chrisann and Tom McCarthy
from: Berkeley Heights, NJ
mailto: ChrisannMc@aol.com
location: bridge of nose, between eyes
My seven year old daughter has been diagnosed with an hemangioma located on the bridge of her nose, between her eyes. It seems to be growing very rapidly. Our pediatrician has been quite insensitive and clearly feels we should "wait and see". We have seen a specialist who has recommended early treatment with steroids. We are weighing the pros and cons of intervention at this point and welcome advice from others who have been there.

name: skistler
from: Sandusky, Ohio
mailto: pkistler@aol.com
location: lower lip, chin and cheeks
Started at 3 weeks and grew so cheeks rested on her shoulders. Lower lig was ballooned out then destroyed. She has had 5 major revisions, laser, dermis graft into lower lip and is now 16.

name: SAVANNAH
from: CHESTER MD
mailto: MCCOWAN @friend.ly.net
location: under left eye lid
My daughter Savannah, 6 months old was born with a strawberry birthmark under her left eye lid docters thought it was caused during her delivery we went to a eye speacialist at the university of maryland in baltimore and found that the location of the birthmark witch is under her eye lid made her vision farsighted and now she has to wear glasses.her docter said that the mark could get smaller in age or it can grow bigger which could make her eye close up.BUT The thing I don't understand is that laser can't be done to remove it because it is to small but should'nt that be the time to do until waiting for it to get out of hand.if anyone with any information please e-mail me.TINA

name: Emma Tamme
from: Danville, Kentucky
mailto: ETamme@Mercer.k12.ky.us
location: Lower left portion of face, neck and upper chest
I am a forty three year old mother of three. I have had my port wine stain since I was born. I am dark complexed and have recently experienced a change in the thickness and texture of my birthmark. Over the years my parents and I have reserched new developments and explored a few. I am currently reserching new medical treatments available. If you have a list server, I am interested in being put on the list. Thank You, Emma Jean Tamme

name: Becky
from: Southern California
mailto: BeckyCW@aol.com
location: right cheek, chin, right side of neck and scalp, upper chest
I am 44 years old, and I have a "portwine stain" birthmark or hemangioma, myself. It is very large and was a very dark purple, not raised but flat on my skin. Over the past 10 years or so, I have had several laser treatments which have lightened the birthmark quite a bit and made it easier to cover with makeup (and less obvious if I decide to run to the store with no makeup - which I would not have done before!). There are a number of types of laser being used on hemangiomas or portwine stains, and I would be happy to share my experience with anyone who would like to ask. Also would be happy to share experiences of how my parents handled the birthmark when I was little and how I coped. (My teenage years were the time of the "natural look" in makeup - not a fun time!) We moved a lot when I was growing up, too, so I had experience with "breaking in" new groups of kids at school repeatedly. All in all, however, the birthmark did not rule my life, nor did it do ter! rible emotional damage -- much t ribute to my parents for that! Anyway, while I would never wish to downplay the significance of a disfiguring birthmark, I do want to encourage you parents out there (and teens?) that this isn't the end of the world! And we are all fortunate that now laser treatments can make such a difference. Lasers are not magic, though -- Some types can leave scars, there is some pain involved, and it's not cheap. I waited until I found a type of laser that did not scar, and am happy that I did. I will probably have more treatments in time, but right now it doesn't seem very urgent. Anyway, please feel free to contact me if you'd like. It would be nice to hear from others with similar backgrounds, OR to offer help, support or advice to anyone who wants it. Becky

name: karen archer
from: cetral texas
mailto: archwalt@onr.com
location: right arm
this is in regard to my own birthmark. i had surgery at 5 yr. old and haven't had any problems until recently (35 yrs.). it appears to be spreading rapidly again and is becoming very cavernous in nature. i went to a physician in austin, and he advised an arteriogram. i'm very apprehensive about having a procedure this invasive and am very interested to learn of others treatment modalites.

name: Mandy Mifsud
from: Australia.
mailto: lala@internex.com.au
location: Left leg,
My son was born with what looked like a bruise on his left calf. It was blue, but you could see red veins in it too. The doctors said it would fade, and i didn't worry about it too much. Pretty soon, it started to grow, and by the time he was two, I was taking him to the doctors' in my home town, but they told me it was just a slight swelling of the muscle, which is what it looked like, at the time. The birthmark stayed like this for a few years, but by the time my son started school, it was becoming alot more noticiable. My son is now 9, and the birthmark is now twice the size of his normal calf. The veins are spreading around his leg, and it is quite large. He gets teased somewhat at school, and sometimes he wakes up in the morning in pain, and limps, but he still plays soccer, and wears shorts in summer. My son is having a MRI scan at the Royal Childrens Hospital in Melbourne, at the end of this month, and then we will expect the results in June. He is to have the birthmark removed, if the doctor can. Depends on the MRI scan. Although the doctor warned that the birthmark can grow back. I was really happy to find this support group, as myself and my family would very much like to correspond with someone, who is also in a similiar situation to my son. I hope to hear from you soon, God Bless, Yours Sincerly, Mandy Mifsud.

name: Tara Rosser
from: Durban, South Africa
mailto: Tara@boe.co.za
location: internal - left ankle
My hemangiona is an internal one in my left ankle.I am now 24 yrs old and have had three operations on it since it was first discovered in 1987.I have recently been to see a doc. at the st.augustines hosp. in durban and he says it is quite serious now. I have been reading about them on the internet and have not come accross one like mine (internal that is) when they first cut it out it measured 10cm x 5cm x 1cm and now it is much bigger and causes immense pain

name: marie hayden
from: uk
mailto: mariehayden22@hotmail.com
location: face
I have a birthmark on my face nose and cheek and I am hoping to have lazer treatment this year and would like to hear from anyone in the uk regarding treatment

name: sid
from: northwest Ohio
mailto: sidneyaweber@hotmail.com
location: Cavernous hemangioma rt leg hip to toes
comment: 50 year old male
Numerous surgeries lost count at 36 If it is below my waist it was cut on. (veins stripped and skin grafts) I wear jobst perscription pressure gradient support stockings. They help control the swelling and discomfort. I could not get along without them. They are expensive but well worth the money. Email me and I will share my experiances and attempt to offer support.

name: Waynetta Olmstead.
from: Indiana
mailto: Rosebud1971@aol.com
location: nose
My daughter was born with a tiny red mark on the left side of her nose the Docter said it was called an angel kiss, and would go away.Within the next couple of weeks it started to grow, and we were starting to worry. So we asked our Docter to refer us to a Docter at the childrens hospital. By the time we got an appointment with the Doctor the birth mark took over her whole nose.So the Docter said we should go with laser surgery to get the birth mark to stop growing, So we took the Doctors advice and she had the surgeey three times before she was even six months old.Now my daughter is 4 years old, and the birth mark is still visiable, and other children often ask about it or make fun of her. Our Docter wants to go in and lift the skin and remove the tumor, but we are worried that it will leave a bad scare because the skin is so thin. If anyone has done this or knows of anyone who has please give me all the information you have. I do not want to make it any worse for my daughter.

name: Felicia Holcomb
from: Coral Springs, Florida (Fort Lauderdale area)
mailto: jholcomb@ispchannel.com
location: lip
This is for Michelle Schultz. I tried to email you and it was returned. Please email me at jholcomb@ispchannel.com to verify your emil address...I have input for you regarding the oral prednisone and it's effects. Thanx, Felicia

name: Anna MacInnes
from: Aberdeen, Scotland
mailto: a.macinnes@abdn.ac.uk
location: Upper left eyelid
Isla my daughter was born 7 weeks prem and no haemangioma was noticable but by 6 weeks old the 'H' had totally covered her left upper eyelid and was so swollen she could no longer open the eye. She is now 10 months old and little has changed with the 'H' She is waiting to see a specialist in England in May 2000 to suggest treatment for her. She has had injections of steroids into the 'H with little effect. The y won't put her on oral steroids as she already has a poor immunine system. They are thinking about interferon injections. Her CT scan shows that the stem of the 'H' is located in her brain and it pushes the eye out and down from the socket.

name: Amanda
from: INDIANA
mailto: SXEREDCHIC@AOL.COM
location: FACE,ARMS,BOTTOCKS,HEAD,LEGS
DOTTIE WAS BORN WITH A PORTWINE STAIN COVERING PARTS OF HER FACE,RIGHT ARM,RIGHT BUTTOCK AND RIGHT LEG.SHE HAS HAD THREE LASER SURGERIES. IT HAS FADED THE BIRTHMARKS A GREAT AMOUNT. THE DOCTORS WANTED TO DO MORE BUT THE LAST ONE WAS DONE ON HER FOURTH BIRTHDAY AND IT WAS A PRETTY TRAUMATIC EXPERIENCE FOR HER. WE HAVE DECIDED NOT TO DO ANYMORE UNTIL SHE IS OLD ENOUGH TO DECIDE FOR HERSELF.SHE IS A BEAUTIFUL LITTLE FIVE YEAR OLD AND THIS HAS NOT AFFECTED HER LIFE AS SIGNIFACANTLY AS THE DR'S THOUGHT IT WOULD. SOMETIMES I GT UPSET WHEN PEOPLE TALK TO ME ABOUT THE BIRTHMARK IN FRONT OF DOTTIE , LIKE SHE IS NOT EVEN THERE.

ame: Traci Sunshine
from: Dover, DE
mailto: tracisun@aol.com
location: Right Upper Lip
We first noticed our son's birthamrk at seven weeks of age. It first appeared like a small bruise on his upper lip. After a few weeks our pediatrician diagnosed it as a possible hemangioma. We were referred to AI Children's Hospital and were not happy with the PS we saw there. We followed up with a PS at Children's Hospital of Phila who is following our child's case. We have been very happy with his care. He is getting a history of it (now ten months of age) but seems to think that it is a venous malformation rather than a hemangioma. Only time will tell.

name: Denise Monsma
from: Great Falls, Montana
mailto: bridenmonsma@mcn.net
location: mouth
Jordan was born on 12/30/97 with an hemangioma at the junction of his upper/lower lip. His hemangioma has seemed has grown on the inside of his mouth more than on the visible portion of his mouth. At this time, the hemangioma appears to be growing but "not overnight". We have been to see a plastic surgeon who says we should continue to watchfully wait to see if the hemangioma will involute over time. Jordan appears to be drooling more due to the hemangioma and chewing may become more difficult if it continues to grow. He does not bite it because it is so big. His speech is not affected at this time. I would appreciate any information you might have concerning mouth hemangiomas

name: Cheryl James
from: California
mailto: cjames37@aol.com
location: Forehead
I have an 8 month old daughter named Kathryn. At the age of 4 weeks. I was changing feeding positions when my thumbnail somewhat caught on her forehead. It didn't break the skin but left a small light indentation line. I of course gave the offended area a kiss with the all important mommy magic to make it better. Several days later a small red line appeared in what seemed the exact spot that my thumbnail grazed. I became alamred that I had done more than a slight bonk to her noggin. I decided to wait and watch to see if it resolved itself. It of course didn't. Small tendrils of red lines seem to eminate from the original line then it began to raise up. I told my husband "if this is a blood blister from where my nail caught her it should be looked at." He said he thought it was getting smaller and to wait. My mother in law was visiting and agreed with him. As nicely as I could I blew off his suggestion and made an appointment for the next day. The guilt over this horri! ble thing I had done to my young est alarmed me more than I can say. When the nurse led us to the examination room she noted Kathryn's forehead and said " ah I see she has a strawberry hemangioma." No. I replied I hurt her with my thumbnail thats why we are here. The doctor came in to examine her and said the exact same thing that the nurse had. (I of course discounting the fact that this doctor probably paid more in student loans than my family makes in a year to get her degree did nothing to disuade me that I had done this thing.) I retold the thumbnail story. She explained that it was total blind fate that it happened to be in the same area and was unrelated. She kindly found some books with examples of the different kinds of hemangiomas and gave me all the information she had on the subject. I went home with mixed emotions grateful that I hadn't done serious harm to my daughter yet fretful over the fact it would more than likely take years to go away. Her regular pediatrician is of the opinion that we need to leave it alone. I asked if I could see the different results of "letting it be" verses having it removed by a plastic surgeon. He is firmly grounded in the leave it be protocol for hemangiomas. So in the tried and true tradtion of any HMO mom. I did an endround on him and had someone else refer me to a plasti! c surgeon. I more than likely wi ll let it resolve itself but would like to have the most information possible before making any firm decision. During the Christmas holidays we flew to Nebraska to visit my husbands parents. We were exposed to many gasps of dismay and "Oh my Lord what happened to that poor baby comments." The day before we were leaving to head back to California My husbands grandmother asked my mother-inlaw to explain again what happpened to Kathryns head. My mother-inlaw told her how I had caught her with my thumbnail and it would take years for it to go away.

name: Amy & Ian Cleaveland
from: Durham, NC
mailto: sugarnspice99@email.msn.com
location: 9 total - liver, thigh, stomach, shoulder, shoulder blade, chin, below eye, back of head, temple
Around 2 weeks we noticed 3 or 4 which we had no idea what they were. The ped. saw no concern for them and pretty much told me they would go away. After my daughters four month check up she referred us to a specialist. They were now concerned with her new external "strawberries". After an ultrasound we discovered our daughter had one located in her liver. We are just now getting the data on this new discovery and doing the "wait and see" tactic. She is now 4 1/2 months old. Although all the research we have found has such large cases of hemangiomas... our daughters largest one might be the size of a small uncooked pinto bean. Our next step maybe requesting an MRI just to make sure there aren't anymore else where in side her body. Since she has so many and they vary from thigh to head we want to be sure. We would love to talk with anyone else going through this... please feel free to email us anytime!!! Thanks.

name: Catherine Lee
from: new jersey
mailto: baby67932@aol.com
location: on back of right leg, on left shoulder on back and the major one is on her face on the right
My daughter is 8 months old now. At the age of 2and a half months she developed Hemangioma. Gabriella has two on her body. Those two appear strawberry in color. But she also has another located on her face. Its located on the right side on her cheek area. Which Childrens Hospital monitor. So far its been stabilizing so they say its best not to touch it and let nature take its course. But they said later when the Hemangioma goes down she might need some plastic surgery on her nose. Being that the pressure on her nose has caused a bit of deformity. But im so proud of my baby she carries on day to day just like any other baby. At times its tough dealing emotionaly with the facts of having a young baby with Hemangioma. But i look past that and can always see her beauty. Both inside and out.In my heart she will always be loved for who she is. On the other hand id like to comment on the public. My daughters Hemangioma on her face isnt strawbrry red it more fleshy and purplish. So there are many of times when im out and people ask what happend to her face. Or even sometimes i even get snickers and nasty looks towards myself.Like im an awful mom who abuses my child . When that happens it realy does hurt my feelings . Because i love my daughter and i do get her the best medical attention for the Hemangioma. Im sure alot of the moms in the group can relate . So if you have any helpful suggestions id appreciate them

name: Trish
from: Philadelphia, PA
mailto: Trish111671@aol.com
location: right side of upper lip
I am a 28 yr old woman who was born with a hemangioma on my upper lip. Within the first year and a half of my life I went thru 3 surgeries. At that point, my parents agreed to let nature take it's course, as the doctors ahd suggested. Growing up, my parents were faced with people thinking they had done some harm to me and I had to deal with the cruelity of children my own age. See beauty comes from inside and God didn't make me different form everyone else, yet he made everyone else different from me. Nature did take it's course and I still have a slightly noticeable hemangioma on the right side of my upper lip. But only others see it. And when small children look or ask what is on my lip, I reply, God made me that way. If I can help, feel free to contact me.

name: Cate Cullen-Doin
from: Albany, New York
mailto: ccullendoin@brittonkill.k12.ny.us.com
location: upper left eyelid and scalp
Maeve is now 12 months old. She is a patient at the Hemangioma Clinic at Albany Medical Center in New York and is followed by Dr. Martin Mihm. She has had two steriod injections, one at 6 months with no response,and another at 10 months with a good response. She had been on 5 months of oral predisone with some complications (chronic ear infections and some loss of hearing). She is now steriod free and seems to have a normal immune system. She has been followed by Dr. Irene Sills in endocrinology. Maeve has her right eye patched 3 hours everyday to improve her vision in her hemangioma eye. She has made great improvements in her sight and no longer has to wear her glasses. She does have a 2 month delay in speech due to the chronic ear infections. Please email me if you have a child with a hemangioma on or near the eye. I can send you some photos of our beautiful daughter with two matching eyes!

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