Welcome to Birthmarks and Hemangiomas InterNETwork Support Group

Jasmine before Surgery

Jasmine now after surgery and laser treatments age 7

Michelle Greco founder of Birthmarks and Hemangiomas InterNETwork Support(BHIS).
Send mail to mgreco2660@cs.com
I formed this support group in order to help people find the resourses they need about birthmarks and hemangiomas. The support group is also a way for us to keep in touch with each other and tell our stories to others who understand. Comfort and having someone there for you is a big help. I have met many nice people while creating and running these pages I hope to meet more and keep in contact with them.

My Daughter's Hemangioma My daughter's hemangioma did not show until she was 2 weeks old and then grew and grew. At 1.5yrs old after trying prednisone oral and injected she had a partial removal her vision was being blocked and the eye doctor thought something needed to be done. For 2 yrs after that we watched the hemangioma and decided at 3.5 yrs she needed something else done. She had to have glasses and they would not rest comfortably on her cheek. We switched doctors because of insurance and the new doctor used lasers to shrink it more. It worked wonderfully. He used a ktp laser for 3 treatments and a pulsed-dye laser for the last treatment. My daughter is 7 now. She is very happy and enjoying school very much. I know this is a big concern for most parents about there child starting school with this difference. My daughter is loving school and making friends. I did write the teacher a long note about my concerns of teasing and all about my daughters hemangioma. It doesn't hurt to educate. My daughter will face future reconstructive surgery. We have left when up to her. She is very happy with her appearance and feels she does not need anymore but that can change when she becomes a teenager. I have more pictures and more details on her web page click on My Daughter's Hemangioma.

To join BHIS Support Group, Click here for form

If any information is wrong please email the correct info at mgreco2660@cs.com If you would like to add a picture email it to me at the address above and I will add it to your remarks or email me if you don't have a scanner but would like to add a picture. I'm updating the pages today (7/20/00). It may take up to 2 weeks to get you on the list.I've been very busy. The last pages are the most current of the support group.Please try those first. Thank you,
Michelle Greco

I have a seven month old daughter with a portwine stain of the face. I am considering laser surgery. The PWS is connected to numerous health problems. Thankfully she has nosighns of any yet. She is being checked for glaucoma tomorrow. If anyone knows if laser surgery will reduce the chances of any health problems related to the PWS please Email me morsecr@sosbbs.com Thankyou

name: Jean Lawry
email: jlawry@pacbell.net
Our daughter Allison has a cavernous hemangiona located on the side of her nose right by her left eye. She is thirteen months old and it still is continuning to grow. She was on predisone to try to reduce the size and it made her real sick. She has constant sinus and ear infections because the hemangiona put a great deal pressure on her nose. She is constantly on antibiotics. The doctors have seen will not perform laser surgery on it because it is too close to her eye. If you have any information re: doctors that would be willing to help our daughter out it is much appercaited.

name: AmyF
email: AimlessF@aol.com
Addison is now 5 months old. At 2 weeks she got a little red mark on her lower left cheek. It grew for about 2 months then seemed to stop. It got about the size of a kidney bean, kinda shiny and raised a little. It hasn't grown since, as a matter of fact it is showing signs of involution. It has flattened out and isn't so shiny and we can see some gray mixed in with the red. I'm writing this because I know when I was looking for in- formation all I found were the stories of children with large hemangiomas. You never know if it is going to continue to grow or just stay small. Either way I have found that being informed is a great comfort. This website was a HUGE help to me. Thank you, please feel free to email me if you'd like to chat. Amy

name: Jen
Our daughter was born with a slightly indented gray patch about the size of a quarter on her upper left arm. Our pediatrician told us that it was a Strawberry Hemangioma and that it would grow rapidly for about 6 months and then eventually go away completely on it's own. The birthmark turned red and puffed up and has grown to about the size of a silver dollar. (Our daughter is 7 1/2 months old now) We have met with two plastic surgeons who told us that the hemangioma will fade considerably over time but there will be some residual scarring. We have decided to have her birthmark surgically removed this December. We would love to hear from anyone else who has had a hemangioma surgically removed.

name: Stefanie
My two year old daughter has a strawberry birthmark about the size of a quarter on her lip. It was very upsetting to us at first but now we don't even notice it. It is realy other people's comments that cause us the most trouble. I'm worried about the emotional and psychologial effect it will have on my daughter.We have had two instances of the birthmark bleeding uncontrolably and would reaaly like to see it gone. We have been quite successful in teaching Emily that it is a beautiful and special quality that she has. In fact she seem to have an attachment to her "Angel Kiss"(what we have taught her to call it). I would really appreciate any info and support

name: Cynthis Neal
It is not my child how has a hemangioma but me.I am 26 years old and am trying despratly to get my hemangioma removed. Since I was a child I have had millions of people coment on my hemangioma because it is a large group of notted blood vessals on my right upper lip making it look like a gaint bruise.I pray every night that I will find a doctor in New Mexico that can remove it.I don't want my child how is now 18 months old to have to expain to her friends and teachers that her mommy did not get hit but just has a hemangioma.

name: Sara L. Rodgers
My son Elijah is 3 and we had always thought that he had a hemangioma on his lower left cheek. It grew a lot over the last year so we were referred to a specialist. He said that it is a venous malformation. He also said that the surgery would be plastic surgery rather than laser. Has anyone had experience with this birthmark?

name: Kara Ann Busch
I am 23 and was born with a large port wine stain on my left check, covering most of my check and a portion of my eyelid. For the past 9 years I have been receiving lazer treatment that has tremendously reduced the color and its chances of enlarging. The treatment has improved my life in more ways than physically. I would love to share my experiences growing up with a birthmark and receiving lazer treatment to anyone that would like to talk to me.

name: Melissa Childers
email: dmathiso@sundance.usd.edu
Back in Sept of 92 Iwas in a car accident in which the car rolled over. I ended up having to go to a Chiropractor. He took x-rays and noticed that my T-10 vertebra was completely black. He sent me to a couple of doctors in town. Finally one doctor suggested that I see a Dr. from the Shriners Hospital in St. Paul, M.N. After he examined me he had me see the head of the Shriners Hospital. In April of 91 I had to go in for a biopsy. They took a piece of bone out and had it tested. A few weeks later the hospital called and told us what it was and they wanted me to go back up to discuss treatment options. I was finally put on Prednisone. I was on that for almost a year. Of course I had to put up with all of the crazy side effects. After they took me off the medicine I began to lose the weight that I had gained, and I started to feel like a normal person again. I went back to St. Paul when I was 18 and the took one final x-ray. It still showed I still had the tumor but it had shrunk quite a bit. I am now 22 years old. I still have problems with the tumor in my back every once in a while. I know I'll probably never get rid of it completely but I have learned not ot take life for granted anymore. I know this tumor thing can be real scary but there are a lot of treatment options and our doctor will set you up with one that is right for you or your child. Believe me you will get through this. If you have any questions or concerns or just need someone to listen please write to me. Good Luck!!!

name: Corie Frysztak
email: corie@ims-chi.com
My daughter Ellie is 4.5 months old and has been treated since she was 3 months old for a hemanigoma on her nose. She's currently taking prednisone and has had 4 laswer treatments. Fortunatley, it looks like the hemangioma is responding to the treatment. After the next laser treatment, they will wean her off of the prednisone and start injecting her nose. Has anyone else experienced a hemangioma in this location, had this treatment and can tell me what the ultimate outcome has been? She's still young and I think we treated it at the right time. thanks for any support and help you can provide.

name: Kim Koop
email: ckoop@rocketmail.com
My daughter is 3 months old. About two weeks after her birth a red mark appeared on her right cheek. As the weeks passed the mark grew and turned bright red. At the age of about 7 weeks her cheek started to swell. Her pediatrician diagnosed her with a strawberry hemangioma. In the last two weeks the surrounding area by her birhtmark shows a blue tone under the skin. As well, the swelling of the cheek is causing her ear canal to close. I am wondering if she has a combination strawberry and cavernous hemangioma. Her birthmark is now a purplish-red color. I wonder if it is starting to involute. Her cheek is swollen about an inch high. Anyone have any advice or info??

name: Sue
email: sblackso@mailhost.eld.ford.com
I'm 33 and recently discovered I had a 3 cm hemangioma on the right lobe of my liver. I understand this is quite common. I'd be interested in hearing from others with hemangioma of the liver.

name: Jenni and Eric Valentine
email: DOMAINE-VAL@msn.com
Our daughter, Eleanor, is three months old; and when she was just a few weeks old, a strawberry hemangioma started forming on the outside of her left eye. It soon began growing more within the eyelid, and right now the outside of her eyelid is black and blue...and the inside has grown to the size of a small marble. We have been told to simply try to keep an eye on it, with the hope of avoiding treatment, and allowing it to run its course and go away on its own. But since it may be starting a stigmatism in her eye, we will probably have a steriod injection in about six more weeks. We live in Portland, Oregon, and we will have been taking her to the Casey Eye Institute up at OHSU...they say they see these quite often and not to worry. Eleanor is developing perfectly otherwise...we're just starting to get tired of answering wierd questions and comments from insensitive strangers... We are very glad to find this group of support!

name: christi
email: christihayes@classic.msn.com
My daughter was born 14 weeks premature in August 1997, weighing one pound, six and a half ounces. Eleven weeks later, she just hit four pounds and we hope to bring her home from the hospital in a few weeks. She has a protruding strawberry hemangioma on her forehead. It is about the size of a nickel, but is pretty prominent on her tiny forehead. And it is growing rapidly. We get different advice from everyone we talk to. Please share with me your experiences with steroids, lasers, etc. It is very difficult to decide how to proceed, since she is so very tiny and has already been through so much. But she is only eleven weeks old and has never left the hospital and I am already sad and weary at having to explain over and over again to people who look at her or her picture and cannot see beyond the big red shinything on her forehead. Thanks.

name: Liam
email: No1Famous@aol.com
My daughter had a hemangiomas on the sides of her face just below her ears, accross her chin and on her lower lip. The sides of her face and chin were treated with a pulse dye laser at a few months old (4 treatments 2 months apart) and the results were great. Her lower lip grew so fast that it split open and bled for about two weeks intil it finally healed. Due to the large size of her lip, about 5 times normal size and scaring, my wife and i had her lower lip operated on at about 2 years old and the results are a 100% improvement. She is now 4 years old and there are no longer signs of the hemangiomas on the sides of her face and except for a scar under her lower lip the results have changed my daughter's life. I am a member of the Belle Foundation, a non-profit organization based in New York City to help families with information and support with hemangiomas.

name: Pat Stegmaier
email: pattyrs@hotmail.com
Hi. My name is Pat. I was born in Parris Island, S.C. That's because my Dad was stationed there as a Marine and Mom went to visit and there I was! I was normal at birth. Mom and Dad tell me that about two weeks later a "mark" began to form on my right cheek. This mark grew over my nose, into my right eye, and over my upper right lip. I was treated in NYC (where my family is from) at Sloan-Kettering, known then as St. Joseph's Memorial. When I think back about it today, it seems that the hospital experience consumed my entire childhood, although I know that is not true. They tried dry ice treatments and ligations (failed), which were common in those days. I would have to say that I wholeheartedly support any parent willing to get his/her child early help. I would ask God to bless you for your foresight. It really hurts to be different, although such "difference" can go a long way to creat a truly dynamic, compassionate and independent human being. I can't t! ell you how much it has meant to me to find this particular group. I've been searching the web to find a doctor in the South Florida area who might be informative enough about the subject of hemangioma to repair my upper lip -- which, OF COURSE, hangs over my lower right. It's taken a lot of me to share this and I hope someone will be able to offer some insight and point me in the direction of a skilled surgeon who specializes in hemangioma. In case my e-mail doesn't show up in this message, please feel free to send mail to "pattyrs@hotmailcom." I would love to hear from each and every one of you. Pat

name: Betsy Malone
I was born with a hemangioma under my right eye and am now a 42 year old special education teacher. When I was an infant, my parents were advised to have the hemangioma removed with a dry-ice treatment that was done 29 times during my first three years of life. This somewhat tortuous treatment left me with a burn-like scar. At the age of nine, my parents took me to a plastic surgeon in New York City who covered the scar with a skin graft, and used some sort of electric needle to lighten some of the other spots. This resulted in a smoother look and I was able to cover the scars with make-up. As I have aged and have gone through 3 pregnancies, I feel as though the hemangiomas have grown, are more noticable, are much bumpier, and are a darker color. I have been getting more comments from strangers, asking "Did your have an accident?", or "Did you get stung by a bee?" No matter how old you are, these comments stick with you, and you search for ways to "fix" it. I have bee! n to Yale University Hospital in New Haven, Ct. and had an MRI done to see what was happening, but after reviewing the results, they felt that they should do nothing because none of my organs were being affected (they are very near my eye, sinuses, and nose.) It was not fully explained to me, but I think that they were worried about hemoraging, or new growths forming if these were removed. I was wondering if anyone has been in this position and can offer some advise.

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