Welcome to Birthmarks and Hemangiomas InterNETwork Support Group Page 8

name: Paul & Susan Ballard
from: Slinger, WI a suburb of Milwaukee, Wisconsin
mailto: pfballard@aol.com
location: right side of nose very close to the eye
McKenzie is 14 weeks old and it has grown rapidly. We are starting the steroid treatment today with Dr. Rabinowitz @ Children's Hospital of Wisconsin. We can not seem to get her to take the medicine and when she does she throws it up. Any suggestions, please email us. Thanks and God Bless

name: Darlene Shrum
from: Medicine Lodge Kansas
mailto:darleneshrum@hotmail.com
location: forehead
when my daughter was first born it looked like a normal strawberry that babies have. But as she got older it got bigger. I took her back to see her doctor and he told me that it would go away when she got to the age of one or a little older.Well now she is 18 months and has not gone away. We took her to see another doctor and he referred us to a plastic surgen. He said that we have three optiuons: surgery, laser{which he said would not affect it}, and radiation which we ruled out immediatley. The birth mark at the top is purple and about 1/4 of an inch thick. It is sweeled up all around the bottom and sometimes there is a purple ring around the bottom. She is scheuduled for surgery june 11. The doctor sayes that is a very easy sergery and that there is nothing to worry about. But I am still worried that she is too young for surgery.

name: Robyn Schnitker
from: Ohio
mailto: mommo5@yahoo.com
location: back of neck
Hannah's birthmark wasn't detected until 1 day after birth. It started as a small red,raised dot the size of a pea behind her neck. She is now 6 months old and the cavernous hemangioma has grown to the size of a golfball, maybe somewhat larger. It continues to grow every week and also continues to scab, crack, and bleed. She is very much aware of it now and always crys when she lays on it or the scab catches on something. We are going to see a plastic surgeon soon. I would definitely apreciate any advice or input on this situation. Thanks! Robyn

name: Jennifer Garcia
from: Stockton, Ca 95210
mailto: Jenkoe@aol.com
location: The birthmark is on her cheek's and has recently spred to under her chin.
Our daughter Deztiny, was about two weeks old when the one on her left cheek started to grow. My husband and I took her to the doctor and they didn't know what it was because the Hemangioma was growing under her skin. We ended up going to about five different doctor's until they finally figured out that the mass growing under her skin was a Hemangioma. Deztiny was about one and a half months old when the one on the right appered. She was about two months old when they started her on steriods. She is up to 7cc's in the morning and 1 more in the afternoon, and they aren't all the way under controll. We are attending a vasculor anomilies clinic, so we hope and pray that they can help us more.

name: Michele
from: Virginia
mailto: banner19@idt.net
location: One just below her right ear, measuring 7 cm. Another smaller one just bellow her belly button.
When my daughter Morgan was about 2 weeks old, I noticed a small red mark just below her ear. Over the next few weeks it grew very rapidly. She was only 5 lb 4 oz when she was born, so this huge mass - that would fill an adult's hand, was terrifying. We saw many doctors and specialists, and the recommendation was always the same -- wait and see. Morgan is now 2 1/2 and we are still waiting. She is a very outgoing and happy child and the hemangioma does not seem to have slowed her down at all, but it won't be long before she starts pre-school, and then kindergarten. Children can be very cruel -- and although we are hopeful that she can avoid surgery, and the hemangioma will go away on its own, everyone I have talked to in the "real world" has said that just doesn't happen. I am beginning to explore options and weigh the risks of surgery. Should I keep waiting a little longer, or is now a good time to look into these options. Any information you can provide would be helpful!

name: Jim and Lauri Licata
from: Lehigh Acres, Florida
mailto: JIMBO2604@AOL.COM
location: 1. large one on her left arm 2. medium one on her back 3. small one behind her right ear
The large one on her arm appeared at birth. It appeared to be flat and red. It then began to grow at an alarming rate until it began to bleed when she was about 2 months old. At that time she was put on predisone. This stopped the growth somewhat and caused ulcerations. After the bout of the predisone she was off of it for a few weeks until it began to hurt her and the ulcerate more. The docotors put her on a stronger dose for 4 weeks. At which time she began to become sleepless and irratable. We looked up on your web sight information and found out about Zantac. We then told our doctor and we got some for her. The hemangioma began to smell foul and ooze. She was then put on and antibotic. I feel that we know more about hemangiomas than the 6 doctors that have looked at her. My child is not a lab experiment and I don't know what else to do. They tell us to let nature take it's course. I find that hard to swallow. Especially when I am finding out more inf! ormation to the contrary. I jus t found out that she should be checked for internal hemangioma's because she has three external ones. Thank God for this web site! I would appreciate any response that would be helpful to us .

name: Anne Boesen
from: Colorado Springs
mailto: Anne.Boesen@wcom.com
location: Parotid Gland - near ear and jaw
I just want to commend everyone on these pages, because you are doing "something" to help your child. Either by sharing information or opening up the lines of communication for others. It's the best thing you can do for your child, educate yourself on hemanagiomas and vascular birthmarks. Today is 6/17/99 and my daughter is 6 months old. She has a parotid hemangioma. Which means it is growing under her skin around the jaw and ear. It protrudes and has a slight superficial aspect to it that is red. We are treating her with steriods now but are looking into surgical removal after she turns one. For all of you who are getting the " wait and see" approach, do not accept this if you see it growing rapidly. You are the parent and you need to educate yourself and then ask to see the appropriate specialist. Do not allow them to make decisions for you. Some hemangiomas can become life threatening. It's not easy when you are the parent of a beautiful child that happen! s to have a disfigurement. But you have to remember that this IS a beautiful child. It is your child! You should do what feels right to you as far as treatment. Do not be afraid of challenging and getting a second opinion if you must. To all of you, how have worried, as I have worried for my child, be strong and ignore people who don't understand what you are going through. If you would like some websites that I have found useful, please don't hesitate to write me at the E-mail listed.

name: Susan Streeter
from: Vassar, KS
mailto: suestrtr@kanza.net
location: Upper lip
My daughter Alexis (Lexie) has had her hemangioma since shortly after birth. It grew rapidly, so we traveled to the Mayo Clinic for evaluation and eventually treatment. We were led to Mayo by co-workers whose daughter had also had a hemangioma on her face and had received treatment there. She had laser surgery performed on a large red spot above her lip and had several steriod injections into the hemangioma. We stopped the steroid treatment after Lexie experienced a phase of literally no growth. She is now 5 years old and will be entering kindergarten in the fall. Her hemangioma is still quite visible and has not really changed since her last treatment over 3 years ago. We are hoping to find a doctor in the Midwest who has experience with hemangiomas and who is willing to treat her. More and more frequently, kids and adults alike are questioning her about her lip. I am a teacher and know how cruel some children can be, especially to a child who is somehow "different". We recently consulted a plastic surgeon in Topeka who had little experience in the area of hemangiomas who did not recommend treatment, so we realize we may have to travel some distance to find a specialist. Hopefully your group will provide us with more information and help us in our search for a qualified doctor.

name: Mitch & Nancy Javeline
from: Franklin Park, NJ
mailto: mitchj@erols.com
location: Head, Neck, Under Chin, Windpipe
Melissa is just under 12 weeks old. At about 1-2 weeks she started developing what we thought was a "newborn" rash on her neck. It turned out to be a Hemangioma which spread rapidly on the side of her head and to under her chin. The pediatrician told us that it would probably go away it time. After it started to "swell" on her neck, the pediatrician made an appointment for us to visit a pediatric dermatologist for an evaluation. This was scheduled for 6/30. Last week, Melissa developed a "barky" cough (sounded like a dog's bark), and was making a lot of noise in her breathing - also started to look like she was having discomfort swallowing her bottle. We took her, at the pediatrician's direction, to an ENT specialist. After a bronchoscope, he diagnosed her with Hemangioma's in the windpipe - on the vocal chords and just below. She was started on high-dose steroids on Tuesday and "seems" to be responding - her breathing is better, she's eating, and the lesions on her face have lightened slightly. She's still in the hospital and will be re-scoped on Tuesday.

name: Kim Cornett
from: Garrett, Kentucky
mailto: zippy@kih.net
location: Left eye and temporal region, behind left ear
Cassidy Faith was born April 1, 1999, with a very light marking on her left temple. We knew at 32 weeks gestation that she had Dandy Walker Malformation as well. Her marking stayed light until about 1 month of age when it began to grow at a rapid pace. She was placed on Predisolone at two months and is seeing some fairly significant results. MRI and CT scans show that her hemangioma is not affecting any internal organs. The vision in her left eye is being affected which perpetuated her treatment. She can now after only two weeks of treatment open her eye about 2/3 of the way. We are very pleased with her progress! We are very interested in corresponding with other families with similar experiences.

name: Michael Scarlett
from: New Zealand
mailto: Michael.Scarlett@xtra.co.nz
location: face
i am 19 and have had 3 laser treatments on a large port-wine stain on the left side of my face i would like to hear about treatments and/or experiences of people with similar conditions. yours sincerely,
michael scarlett

name: MARIE EDGERTON
from: ST HELENS, MERSEYSIDE, ENGLAND
mailto: marieedgerton@hotmail.com
location: face and body
My son Jamie was born with a port wine stain, which is particularly noticeable on his face, it is more patchy on his body. He started having laser treatment on his face, about eighteen months ago, at Alder Hey Children's Hospital in Liverpool. However, the results have not been as good as expected, and we now have to wait six months before the doctors will decide what to do next. We have found it very hard, the laser treatments would leave Jamie's face swollen and blistered for days aftewards, but he has always been very brave. People can be very ignorant and rude, although he has started playschool recently and has had no problems settling in and making friends. We find especially hard not really knowing what options there are, as our doctors tell us very little. It seems that where you live has a lot to do with what kind of treatment you can get. I have found a lot of information on the internet and I am astonished at some of the photos I have seen, of successful tr! eatments of birthmarks on childr en my son's age. The children were american and treated in the US, the treatment seems a lot more advanced over there. It does seem unfair to me though.

name: Cathy Lorenz
from: Rockford,IL.
mailto: sassycat73@webtv.net
location: under left eye, from the eyelid to nose
I have a daughter, Kersty, now 5 months old, with a hemangioma under her left eye. It appeared when she was 3 days old. We had never heard of, or seen this before. It got very swollen, and she could not open her left eye. Her pediatrician recommended that we go see Dr. Bruce Bauer, at Children's Memorial Hospital in Chicago. He is a plastic surgeon. At 2 months of age, he put Kersty on the oral prednisone. She took that for a month, with no reactions. The swelling went down considerably. She can open her left eye pretty good now. To make sure the eye was/is not damaged, Dr. Bauer referred us to an opthamologist at the same hosp. She says that Kersty will need glasses eventually...she has an astigmatism. So far Dr. Bauer, and we are all very happy that the swelling has not returned. The color has faded a little as well. He wants to do (something) when she gets around 4years of age. He doesn't know at this point, but she will probably need surgery. For no! w we are just waiting to see wha t nature does!!

name: Mark sheridan
from: shropshire, uk
mailto: mark@sheridanmj.freeserve.co.uk
location: right lower arm and hand
Dominic has a cavernous haemangioma on said arm. he has had 6 doses of pulse dye laser but we are not happy with the service or attitude os Birmingham childrens hospital. We have asked for a second opinion. But we wondered if there is anything available in the usa to help us/him

name: Cathy Benge
from: Enid, Oklahoma, USA
mailto: jason@enid.com
location: left forearm
My son Jacob (Jake) was born in December, so most of the family and the general public didn't realize Jake had a hemangioma. Once warmer weather came around, I found myself having to answer the same question over and over... "what happened to his arm?" I am glad I have the chance to educate others, but it gets tiring. Jake is now 6 1/2 months old. There are no "experts" in our area with whom I can consult, so I am doing my own research online. So far, our doctors have told us to wait and watch his growth, which is now approximately 6.5 cm in diameter and 2-3 cm raised. I have just recently started to research, after hearing from a family friend (plastic surgeon's nurse) that laser surgery would not remove his hemangioma as we had been told.

name: Allison
from: New York
mailto: alli275@hotmail.com
location: Next to her eye on her nose
We noticed 3 tiny little red dots on Casey's nose when she was about 2 weeks old. Then it started to grow and get red and bumpy. The dermotologist said odds are it'll disappear on it's own. We have an appointment w/an eye dr this week to make sure her vision isn't being affected. I hate how everybody stares at her or asks me what happened to her. She's only 3 months old now but eventually she's going to be aware of this.

name: Gina Bennicasa
from: Manhattan, New York
mailto: ginab@impactcomm.com
location: thigh and side area- its huge!
I am 33 years old and since I can remember I have had surgeries on my side and thigh to help reduce the hemangioma. As I reached high school and college it got so bad- I had open pimple type things that bled & oozed all the time. I had skin grafts and that seemed to help. In Sept. of 1999 I am going to have another major surgery to help reduce this even more. I am getting tissue expanders put under my skin, the skin is going to stretch and then once that happens its going to replace some of the bad area.

name: INGRID VARGAS
from: PUERTO RICO
mailto: ivf95@hotmail.com
location: TOUNGE, INSIDE LEFT CHEEK, ALL MOUTH GUMS, LOWER LIP AND UNDER MY NOSE
I AM A 22 YEAR OLD FEMALE FROM SAN JUAN, PUERTO RICO AND THE EXPERIENCE WITH HEMANGIOMAS IS PERSONAL. I'VE HAD HEMANGIOMAS SINCE I WAS BORN AND I GOT THE ONES IN MY MOUTH WHEN I WAS 14 YEARS OLD. IT HAS BEEN VERY DIFFICULT FOR ME TO DEAL WITH THE SITUATION EVENTHOUGH I'VE BEEN THROUGH SURGERY TWICE AND EMBOLIZATION ONCE. NEXT WEEK 19-23 JULY MY MAXILOFACIAL SURGEON IS REMOVING MY WISDOM TEETH AND THE PROCEDURE IS GOING TO BE DONE AT A LOCAL HOSPITAL BECAUSE HE IS NOT TAKING THE RISK OF DOING IT AT HIS OFFICE BECAUSE HE IS TAKING PRECAUTIONS IN CASE OF ANY HEMORRHAGE.I KNOW THERE ARE PEOLPLE WITH WORST CASES THAN MINE BECAUSE MY HEMANGIOMAS ARE NOT EXPOSE BUT ALL THE TROUBLE I HAVE TO GO THROUGH BECAUSE THERE ARE FEW DOCTORS THAT ARE WILLING TO TAKE CARE OF ME IN ANY SITUATION BECAUSE OF MY CONDITION IS SOMETIMES FRUSTRATING. AND WHEN PEOPLE NOTICE THAT I HAVE HEMANGIOMAS THE COMMENTS THEY MAKE ARE NOT TOO PLEASEANT TO HEAR.

name: Dawn Bukofzer
from: Oklahoma
mailto: fan4strait@aol.com
location: middle of the forehead
We first noticed our son's hemangioma when he was just a few days old. It continued to grow over the next 12 months. His doctor wants to wait and see what happens. I have been frustrated with the lack of information from him. He never even mentioned treatment with steroids. Whether or not it was the right option, I'm still angry that he did not even mention it to me. As his parent I think I should have been given all the information available and the pros and cons of each method.

name: Nicole Huizingh
from: Grand Rapids Michigan
mailto: ben@i2k.com
location: On my daughters butt and down the back of each leg
She is 3 months old and it has been on her butt and legs since she was born, but has continued to become more raised. We have been to two different dermatologists, bith tell us it's a strawberry hemangioma, but were not helpful at all on the different treatments available. We then saw a plastic surgeon and we have a laser surgery scheduled in 2 weeks. The bithmarks is almost all an open sore that bleed occationaly and is extremly painfull. The doctors all perscibed different creams and ointments, none of which worked. Some of the ointments stug and Rhiannon would not stop screaming. the only cream that will calm her down after a diaper changing or bath is a neosporin plus pain, but we've heard that too much antibiotic cream can make the sore even worse. Me and my parents are extremely frustred with the whole situation and hope the laser surgery will help. Nicole and Rhiannon

name: Holly Dykstra
from: Dunnville, Ont. Canada
mailto: dykstraholly@hotmail.com
location: leftside cheek and behind ear
My daughter Chelsea is now 17 months old. When she was 2 weeks old three strawberry marks came up on her cheek and by her ear. When she was 3 weeks old her hemangioma came. That was when we noticed two more strawberry marks come up, one on her neck and underside of her chin. She was sent to a pediatric surgeon and because of the location of the hemangioma he was not going to operate on her unless it interfeered with her hearing or another on grew from one of the strawberry marks on her throat. His suggestion was to just leave it alone and observe it. Her hemangioma was located over the jugular vein and under her cheek muscle. He said it would be a 'bloody' mess and that her left side would be paralyzed (meaning no smiles) because of cutting through the cheek muscle. She went back every 3 months twice and then it stretched out to every six months, now we don't have to take her back for a year. Her hemangioma stopped growing before she was a year old, and now it looks l! ike it might be slowly shrinking . We have been told that after it is gone and there is loose skin she will probably have to have plastic surgeory. We are going to leave that decision up to her. If anyone has any imformation about this type of hemangioma (capillary) I would really like to hear from you. My Email address is dykstraholly@hatmail.com. Thank you.

name: AMIE CUMMINS
from: DAYTON, OHIO
mailto: ACDCCUMMINS42@PRODIGY.NET
location: INSIDE MY NOSE, MOUTH, AND NECK
I CURRENTLY HAVE A TRACH. THE DOCTORS HAVE NO WAY OF HELPING ME RIGHT NOW. I AM 19 YEARS OLD. WITH A BLUE CAVERNOUSE HEMANGIOMA ON MY NECK. CAN ANYONE REFER ME TO DOCTORS WITH ANY NEW TREATMENT. CAN ANYONE TELL ME IF THEY'VE HAD OR KNOW SOMEONE WHO HAS A SIMILAR CASE THAT HAS HAD CHILDREN? PLEASE E-MAIL ME WITH ANY INFO. I'M DESPRATE!!

name: Samantha & Andy Street
from: Shropshire, England
mailto: supervi5or@aol.com
location: back,left side of face,neck,chest,scalp,behind ears,left eyelid,around windpipe and heart
Emma was born 2 weeks late on March 2snd 1999. The hemangioma became visible first on her back at 6 weeks, at 8weeks her neck, at 10 weeks her face. There was no discolouring, but we were out of our minds with worry. Our doctor kept reassuring us that it was just cosmetic, and couldn't do any harm.At 10 weeks,she started to breath loudly. The Dr said she had a cold, although she had no other symptoms. I asked if the hemangioma could be internal and pressing on her trachea, he said that it couldn't happen. Less than 2 weeks later Emma was recovering from having had a tracheostomy. Her trachea was so distended that the tracheostomy was nearly under her ear.She will have to have the trache until the hemangioma involutes. Emma is on a course of prednisone and tranexamic acid.She seems to be responding well, with few side effects.Everything seems to have stopped growing,at the moment, its one day at a time. Emma is now 6mths old, if she continues as she is we will be happy.But because of the internal risks,the next step is interferon,We don't want to,unless it is life threatening.We really need some more info about interferon, if anyone can help please contact us. We both feel angry that the severity of Emmas condition wasn't recognised earlier, but life is too short and too precious to dwell on the anger.Life is for living. Sam and Andy.

name: Sylvana Rizzi
from: Montreal, canada
mailto: sylvana.rizzi@sympatico.ca
location: on the right cheek, next to the eye
hello, my son 2 months old son. is born with a cafe au lait spot on is face as big as a quater.since is born i'm doing all kind of reserch to get it removed. in a fews weeks i'm starting lasers treatment, but i'm really anxious. I'm worried for my little boy...if anybody ad that kind of experience i would really appreciate if you could tell me somethings, My only though since is born as been is birthmark... Thanks

name: Julita Rivera
from: Puerto Rico
mailto: sanddollar19@hotmail.com
location: Face
I was born 1968 with a port wine stain . This blood birth mark covers almost all the left side of my face including part of my neck. the left ear is deep red and larger that my right ear. since i was 13 i loose my hearing from the left ear. The left cheek is deep red in some areas and is also quite enlarged. my upper lip is clear but the inferior lip is deep red and very enlarged. Inside my mouth i also have the hemangioma specifically in the left side my teeth gum and tongue are red . since mi birth my mom tried to do something about my condition but doctors told her in those days that no treatment so far was created for that type of marks. in 1983 i went to Schirners burn instite in boston and the doctors did a cirgury to reduce the size of my inferior lip, they also did a chin implant because they figured mine chin was to small. what i don't like is the scare that i have now. in 1992 a doctor in puerto rico stared a treatment with the tunable dye laser in my fa! ce. he treated it for two years and the stain became a little clear specially in the neck on where my hemangioma is not that deep. i'm not longer in the treatment because the goverment agency who was covering my treatment refused to continued it. i have a medical plan but it doesn't covered it. those first 2 years costed the agency 20,000 dollars. because my stain is so deep and large that 2 years treatment didn't clear up that much the stain. the bad thing is that i'm not a rich person and i'm not able to find the money for 6 or 7 years of treatment. when i think researchers find ways to help people with different medical conditions but then treatment's cost are too high for poor people i feel depress.so here am i wishing to complete my treatment but with no money to paid it. on the other hand i think that with my 31 years old i have learned to leave with this but this doesn't mean i prefer to have it. i don't have any computer friend and i will love to have one.

name: Jennifer
from: Indiana
mailto: jenericmac@yahoo.com
location: Right Cheek
My 4 mo. old daughter has compound hemangioma on her right cheek. The strawberry is about the size of a quarter and the compound portion is about half the size of a ping pong ball underneath her little cheek. We are having pulse dye laser treatments and steroid injections at IU Medical Center in Indianapolis. We've also traveled to Arkansas Children's Hospital to see Dr. Waner. At this time, Dr. Waner does not recommend surgicaly removing it. If it grows or starts to distort her facial features, we will consider surgery. As first time parents, we are always wondering if we are doing the right thing for Mackenna. The laser treatments are painful as are the injections. She cries a lot which breaks our hearts. After just two treatments about a month apart, we haven't seen much improvement. In fact, the strawberry has grown slightly. The cavernous portion has remained the same. I guess that's a good thing since it hasn't gotten any bigger. I would love to hear from anybody out there...pleae share your story. Please e-mail me at jenericmac@yahoo.com. I could really use the support!

name: Melissa Cammarasana
from: Washington Crossing, PA
mailto: melissa_cammarasana@ml.com
location: left cheek; close to mouth
Appeared as small pink circle (very negligible looking) at birth. Weeks after birth, it became bigger and redder, and, at one point bled. Visited pediatrician who referred us the Dr. Honig at Children's who diagnosed it as a hemangioma. We were led to believe it would "involute" completely by the time she was 18 months old. At 12 months, there were not signs of progressed involution and were told we'd have to revisit at age two to talk about removal options. Juliet is 18 months old and we are waiting for another 6 months to return to Children's Hosp. in Phila.

name: Brandi Decker
from: Casper, Wyoming
mailto: swsmom6687@aol.com
location: face,head,neck,shoulders,left retina,brain, eardrum and arms
My son is one year old. he has sturge-weber syndrome. He has glaucoma to the left eye. he has seizures. He has had a functional hemespherectomy to the left side of his brain. He is my only son out of three children. He is developmentally delayed. I would explain him as beeing a four month old one year old.

name: Cheryl Vogel
from: Ripley Ohio
mailto: Sydsworld@webtv.net
location: left ear and below ear on the side of her neck
My daughter Sydney was born June 2, 1996 and like most of the other stories I have read the hemangioma did not appear until she was around a week old and and was just a small red spot, actually at the time we were thought it was a bug bite until we took her to the doctor for a check up thats when they told us it was a hemangioma. It grew very fast, and she suffered with sores and bleeding. We took her to many doctors and dermatologists who all suggested the same thing that we wait and let it go away on its own. So thats what we did and it has shown suggnificant improvement. She is now a 3 year old healthy, active and beautiful girl. But we want (like most others) to have it removed before she starts school. Because she now has been asking us to "take it off", and I am sure you know how difficult this is to expain to a 3 year old. We would now like to find a doctor for treatment. Something else that is very unusual is that she also has 3 first cousins all on the same side of the family whom have hemangiomas. The first was born with a very small one on his chest, his never evolved like Sydneys it is almost gone now. He is 7 weeks older than Sydney. The third (Sydney being the second) has a very large one on his chin. Now the fourth one just went in for a 2 week check up at the doctor and her parents were also told she has a hemangioma on her chin. This is my husbands side of the family, they are a very large family with 10 children and around 21 grandchildren. All of the children with hemangiomas have different parents and are the first! known in the family to have the se. I have never seen or heard they were hereditary. I was wondering if anyone might have any info. on this, if you do would you please email me and let me know. Thank you and God bless, Cheryl Vogel

name: Lisa Vogel
from: West Union, Ohio
mailto: ashley240@webtv.net
location: right cheek, on and above jawline
Jacob's hemanginoma started as a small bruise, the doctors said it was nothing to worry about, well, within a week it started to raise, and I guess you know the rest of the story. During it's growth, the hemanginoma developed several ulcers tat would bleed and they required treatment. At this time, doctors say that it has probably stopped growing, but has not started to go away. My major concern right now is that Jacob is not speaking, and I believe it is due to the birthmark. I have seen several dermatologists, and nobody wants to remove it, I'm at the end of my rope!

name: Heidy & David Taylor
from: Indiana & New Jersey - living in Philippines
mailto: dhtaylor@skyinet.net
location: right cheek
Brittany's bithmark was only slightly noticable at birth - like a small rash. Over the next 3 months it grew bright red in color. At around 3 months it began to raise and now looks quite swollen, red and shiny. It is fortunately not effecting her vision or any other organ. Brittany is now 9 months old and she is a delight. WE are living in the Philippines and until I read Linda Shannon's book I thought we were doing the right thing by letting the hemangioma takes it's due course - it would go away on it's own. Now my husband and I are not sure. Living oversea are options are limited but we are more than willing to do whatever it takes including flying around the world and back to make beauty even more beautiful. Heidy & David Taylor

name: Melissa Moran
from: Round Lake Heights, Illinois
mailto: Tmoran2683@aol.com
location: Back and anus
my step-daughter is 6 1/2 years old and has2 hemangioamas...one on her back that is about the size of a flattened golf ball and a smaller oneon her anus which is oddly shaped and bright red. The one on her back was obvious at birth...about the size of a cherry and grew until she was 2 1/2, then got lighter, but the size is the same. The one on her anus appeared at about 4 months of age and remains unchanged. Heather is beginning to be very self-conscious aboout the one on her back...especially sonce people's usual reaction to seeing it it what HAPPENED to you BACK, Honey?!?!? while their eyes glare "what did you DO to her?" at me. We are under a lot of pressure from Heather and my mother-in-law to have it emoved, but we haven't found a doctor to help us.

name: Crystal Haydt
from: Woodstock,Ont
mailto: bambibabe8@hotmail.com
location: chin,rightarm, rightwrist, chest,leg, back,liver
My Adrianne is 4 months and she was born with one on her cheek I just thoght it was abirth mark bu it kept growing and more and more came when I took her to a pediatrician he told me to get tests done and they found them on her liver her liver is so large also it is causing heart failure and she had sevear aniemia and they gave her a blood transfusion. She is on heart meds and prednisone to try and shrink them and they got her failure under control but if at some point they couln't control it they would try embolization in Toronto then very last resort liver transplant we have been in hospital for over amonth now and I'm getting tired of it but she needs to be wathched carefully she also has a terrible cough that they say comes with the heart failure. I really want to find someone in a similar situation or that has been please help. Thanks

name: Jeff Campbell
from: Atlanta, Georgia
mailto: jcampbel@cdcfedcu.com
location: inside of his left leg from the top of his knee to the middle of his calf
Our child is now almost two weeks old. He was born with what has been diagnosed as a hemangioma on the inside of his left leg running from the top of his knee to the middle of his calf. It is raised about 1/2 -3/4 of an inch and is about the size of a golf ball. It was there at birth and does not appear to have grow since birth. It is not a bright red color. It appears to be more of a blueish grey color. I was wondering if anyone out there has gone through an experience simalar to this and what corse of action you decided to take. He also appears to have some swollen lymph nodes on the left side of his groin region. I was also wondering is this is normal. He was the second of a set of twins born in the 39th week of pregnancy. He weighed 7 pounds at birth. Thanks for your help.

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