Welcome to Birthmarks and Hemangiomas InterNETwork Support Group Page 7

name: Maggie Zuendel
from: Memphis, TN
mailto: zuendel@okadvertising.com
location: lower lip and chin
She was diagnosed when she was 4 weeks old and treatment (dry ice) began immediately and continued until her surgery one week after her first birthday. The treatments were to keep the hemangioma at bay until it stopped growing. Then surgery could be performed. She went into the operating room with this very large bottom lip and returned with a tiny, beautiful lip - and 8 stitches. Dr. Robert Allen of LeBonheur Children's Hospital in Memphis performed the surgery - and he was truly a miracle worker - and very much ahead of his time. He assured me throughout her first year that it was just a matter of time until she would look "normal" - and I never doubted him. The surgery involved cutting a "V" section out of her lip and chin - and simply pulling the two sides together with 8 stitches. She had subsequent surgeries when she was two and three (outpatient) - and was going to have her final surgery when she stopped growing (around 15 or 16) for cosmetic purposes - ! but, tragically, Dr. Allen was killed in a car accident before the surgery could be performed. My daughter is now 26 years old with an 18 month old daughter of her own. She has little or no scarring (I can see it because I know it's there). No one else can believe it when they see the "before" pictures. I am so glad there are support groups for young mothers. When my daughter was diagnosed, I had never heard the word "hemangioma".

name: Traci Janes
from: Brunswick, Georgia
mailto: ktjanes@darientel.net
location: cheek
My daughter is now 3 1/2 years old. My husband and I have taken her to surgeon since she was a newborn. We decided, after lots of tears and research, that we would wait and see what it does on its on. It has dramatically changed and is in the stages of going away. However; Kayla will be starting pre-k this September and we are considering having the laser surgery done now. Kayla does not seem to be really bothered by it, she now tells people, who sometimes have no cooth, that it is her angel kiss. "This is where the angel kissed me before she gave me to my Mommy!!!" I would like to hear from parents who have had the surgery done. I am so afraid of making the wrong decision!!!! Thank You, Traci Janes

name: Kathy Wolf
from: Wisconsin Rapids, Wisconsin
mailto: plumber@tznet.com
location: liver and external
Anna was born April 18, 1997. Two weeks after we noticed small marks which were turning red as time went on. At her two week check-up, our doctor informed us that because she had more than three on her body she should be checked for internal hemangiomas. It turned out that her liver was completely filled with them. We immediately were checked into the neonatal intensive care unit at the hospital. After a series of ultrasounds and cat scans, Anna was put on steroids for six weeks, and eventually put on alpha interferon. We are pleased to report that at almost 2 years of age, Anna is a normal 2 year old with no apparant problems. Her hemangiomas have been gone for some time now. It's been a rough year and a half, but thanks to God our little girl is alive and healthy. Not to mention, keeping up with her two older brothers.

name: Beth Purcell
from: Seattle, Wa
mailto: baselshad@aol.com
location: forehead
This is a success story!!! My son is 9 months old and after being misdirected by doctors to wait it out or to try laser treatment here in Seattle, we eventually found Dr. Reinisch at Children's Hospital in LA. We spoke with Dr. R. and with many of his former patients that had had incredible success with surgical excision of their children's hemagiomas. We flew to LA last week and are amazed at how 'simple' the surgery was. Zachery looks incredible - the scar is pencil thin and he bounced back so quick! I know that surgery isn't for everyone - but I feel that everyone should at least be made aware that this is a very real, very possible, and very instantaneuos solution. I would be happy to send photos or speak with anyone further about this.

name: Michelle Dufort
from: Vermont
mailto: mdufort@sover.net
location: upper lip and below left nostril
My daughter has a hemangioma on her left upper lip and below her left nostril. She is two now and it is regressing, but appears to be regressing slowly. My concerns for her now, as they were when she was an infant, are primarily for her emotional well-being. We had two laser surgeries after her lip ulcerated at age 3 months. She was devasted by the pain and so were we. We opted not to due any more laser surgery. The results were not dramatic and there may have been some scarring caused by surgery. The surgery may have slowed the growth, but it is impossible to say. We also opted not to have steroid treatments because we were concerned about the effect of this on a developing child. I have many questions about how to talk to my daughter in a positive way about her hemangioma. I am concerned about the emotional impact of putting her through plastic surgery at a young age. I'm interested in the mental health side of hemangiomas and raising a healthy daughter who might be going to school with a facial disfigurement. I would love to talk to anyone who has grappled with these issues and could offer some support or advice. Thanks!

name: Erika Roberts
from: 1191 North Main St. #7, Bountiful, Utah, 84010
mailto: goldshw@uswest.net
location: right cheek, about 1 1/2" dia. there is swelling about the size of golf ball.
It has been very hard! People can be so cruel!!! My Daughters Hemangioma showed up at abouy two weeks jaust small and light and then grew from there. she is know about 9 months old. She started having surgery at 3 1/2 months and it just grew so fast. I know it would be a lot bigger with out the surgery. She has also beenon Steriods and that helped a lot but, she had to take a break from them and it has come back full force the swelling has returned a lot. Sometimes I feel as if my daughter is the only one out there with this. It is very hard when people just stare at her. I just want them to see the sweetlittle girl I see!!!!

name: robyn smith
from: DESTIN FLORIDA
mailto: RJ0320@AOL.COM
location: LIP ,LOWER CHIN , ON BOTH SIDES OF HIS EARS AND HE HAS A LITTLE ON THE BOTTOM OF HIS MOUTH
My son's hemangima appeared when he was 6 weeks old. I also have a hemangima on my upperlip under my nose. My son is 4 know and he has had about 10 laser treatments in Lackland Air Force Base . We fly out to Texas every few months. I do get very upset when people stare at my child and I was even shopping at the mall and had a store clerk tell me that they were going to call the police. I really would like to hear how other families deal with this problem. I just don't want my son to go through what I did when I was a child. I want him to have high self confidence in himself.

name: Kathy Ayuyao
from: Newport Beach, CA
mailto: kayuyao@yahoo.com
location: side of face, inside ear canal
We are just starting the process. It appeared weeks after birth. She is now 5 months old and it has continued to grow. The MD wants to put her on steroids at this point. We are also going through hearing tests, and thus far they have come back abnormal. We will continue that process.

name: Julie Sharp
from: Rancho Santa Margarita, CA (Los Angeles area)
mailto: None
location: Lower lip
My daughter Sierra was born May 9, 1998. A few days later a red spot appeared on her lip and started growing and growing. Her pediatrician said not to worry because it would stop growing and be gone by age 1 or 2. But said if it bothered me to see a plastic surgeon he knew of. Of course, it bothered me, so at 3 months we went to the plastic surgeon. At four months she had her first laser treatment. I think it helped it to stop growing, but left a scar. Three months later she had steriod injections into the hemangioma at one office visit. It really didn't do too much to help, but the birthmark seemed to be involuting. Last Thursday, March 4, 1999 she underwent a more extentsive laser treatment where the laser went deeper into the birthmark. Her lip a week later is still very swollen and scabby. It really looks awful. The doctor says it takes about 2 weeks for the swelling to go down. I pray this works, because the pain we have caused to her is painful to me and my husband. We just have to be patient. The doctor says she will still need more reconstructive surgery. I will have to send more later, since I'm at the library, and have a 1 hour limit that is almost up. Thank you for the web site and information. It has helped so much. The doctors I have seen provide nothing.

name: Helen Vicente
from: Ilfracombe, Devon, UK
mailto: RobinLasto@aol.com
location: 1st covering forearm,wrist and hand, 2nd on left side and 3rd on her groin.
Sofia, my daughter is 4, she was born with three hemangiomas, not that we were told that at the time. Straight after birth my husband and I noticed what we thought was a bruise and brought it to the attention of the paediatrician and midwife, we were told it was "just a birthmark". We took Sofia home and the birthmark began to grow and become more and more purple in colour and the skin around her thumb nail began to go black, We took her to our G.P. and he told us use an elasticated bandage to try and reduce the swelling and he refered Sofia to a Paediatrician. The Paediatrician saw her and refered her to a Plastic Surgeon. Meanwhile, the hemangioma began to split and ulcerate, we took her to the G.P. he suggest we cleansed the wound with salt water. The morning of the appointment with the Plastic Surgeon I went to cleanse Sofia's hemangioma and the black scab covereing a large area of her hand began to lift away I decided to leave it alone. As soon as the Plastic Surgeon saw her he admitted her to hospital as her whole arm, wrist and hand we badly infected and if it and began to bleed a baby of her age (4 months) could bleed to death. We were in hospital with Sofia for 10 days until the infection was supressed and once she was out of danger we were sent home. Over the next few months the hemangioma continued to ulcerate, until the wound was so deep and infected the Plastic Surgeon decided to operate to clean out the infected tissue and replace the skin with a skin graft, which he did. Eventually the hemangioma stopped ulcerating and the wound closed, this process from start to finish took 12 months. We were told that the hemangioma was far too thick and large to remove with laser treatment and that the only course of treatment is to wear a compression garment and wait for the hemangioma to diminish. Nothing was ever planned for the other hemangiomas. For the last two and half years we thought that was all that we could do for Sofia and that the ulceration which she endured was unique to Sofia. That was until I looked on the Internet in February of this year and found so much information and support from doctors and parents in the USA. Not until then did I find out the Sofia's ulceration was something which could have been predicted and treated earlier. Sofia has three hemangiomas and she has never been internally examined for further hemangiomas. I written to Sofia's consultants and have asked for their help and I have so far had no reply to my questions. While I was on the Internet I found Linda Shannon's web page of Arkansas Children's Hospital and I e-mailed her telling her of Sofia's hemangiomas. She told me that her colleague Dr. Waner was coming to England and would like to see Sofia. I have made an appointment for Sofia to see him in one weeks time and I'm hoping he will be able to answer some of my questions and maybe give us some hope Sofia can be helped before her disfigurement becomes a problem and changes her from a happy go lucky child. If you are a worried parent fight for what you think is best for your child. Good Luck, Helen Vicente

name: Dawn Oliver
from: Chandler Arizona
mailto: gdoliver@ix.netcom.com
location: between the eyebrows
My son Scott is 4 months . At 3 and 3.5 months respectively he had his hemangioma lasered. There seems to be very little change to it.It may be slightly flatter and slight purple/ graying mixed in with the red. However it also seems to have grown in diameter. It is approximately the size of an M@M candy. Could this lack of significant results be due to the hemangioma still being in the growing phase. Anyone who has had results with the laser , what pattern was seen during the resolution and how many treatments did you have done. Please write to me with any feedback at gdoliver@ix.netcom.com

name: Guy Venables
from: Westcliff on Sea, Essex, England
mailto: guyv@virgin;net
location: Nose, lip, mouth.
Amelia was born in July 1997, within days her hemangioma appeared and she had to be rushed to hospital as she could not breath, the hemangioma had grown so fast it was blocking her wide pipe. She was then transfered to Great Ormand street hospital where she was treated with steriods. This has reduced the hemangioma to safe level and as she is growing it is getting smaller, however we are finding it hard to find any info on corrective surgery and most people I speak to say this can only be done in the US, so I am looking for as much information a possible.

name: Cheryl Hardwick
from: Everett ,Wa near Seattle
mailto: swx@skyvalley.net icq#15545394
location: temple, cheek, behind ear
this is my grandson that has this problem , my daughter in law was told to see how it looks when he is 1yr. If it has gone down they were going to use steroids to shink it. it isn't effecting his eye sight or hearing as we can tell he is 7 mo. old . looking for info to give to them to help my little "doodle bug"

name: robyn schnitker
from: pemberville, ohio
mailto: rrseke@wcnet.org
location: the back of her neck
this "cavernous hemangioma" as her doctors would call it, showed up as a small red dot about 1-2 days after birth. within 1 month it grew to about nickel size and at that time was slightly raised. Hannah is now 4 1/2 mos old and it is now the size of a half-dollar and is somewhat necrotic. It also seems to be growing "inside" if that sounds right. I have been referred to a dermatologist because of the location and because of the necrotic state. I am very concerned about drugs and would rather do laser surgery. Do they always start out with drugs? I am always open for any feedback on this subject.

name: Shelly Hintz
from: Wisconsin
mailto: jshintz@dwave.net
location: Underneath right eye
Our daughter Jordyn is now 4 years old. She was born with a hemangioma underneath her right eye. At the time of birth, it was almost black in color and protruded out approx 3/8" from her eye. The Doctor did not know what it was that she had. My husband and I were scared to death about our new beautiful daughter. The next day the pediatrician told us it was a hemangioma and that we should have it checked by Dr Rosio at Marshfield Clinic. We took Jordyn to see Dr. Rosio when she was 3 days old. She received a steroid treatment that same day because the Doctor was afraid that it may continue to grow and affect her vision. We were told to monitor the hemangioma and come back every year for a check up. It was hard for us to notice any change in the size because we were with her every day, but we were amazed at the check ups when we saw pictures they took the previous year. Jordyn hasn't received any other treatment and I am happy to say we are progressing very well. What used to be black in color and very puffy is now almost flat and light blue. The hemangioma use to start directly underneath her eyelid and was the entire length of her eye. It has now dropped down from her lid and has come away from the inside of her eye quite a bit. I know it's very hard to believe the Doctors when they say to let nature take its course, but for us this has proven itself. We are very happy with Jordyn's progress. Just remember to keep your head held high and remember YOUR CHILD IS BEAUTIFUL!! And for the rude strangers when you're out and about, tell them "It's an Angel Kiss" - they won't ask again. One last question for anybody. I know of two other mothers that I grew up with that both have children who were born with hemangiomas. We were all raised in a farming community on the same road. Has there been any link or research done on this kind of statistic? It just seems kind of strange for as rare as hemangiomas are that there are 3 of us with kids who have them. I would appreciate any information anybody may have

name: lisa & keith v
from: Clermont, Florida
mailto: keith.veres@wilcom.com
location: under left eye
Our baby daughter Alyssa developed a small spot under her left eye about a week after we brought her home from the hospital. By the time she was 8 weeks old it had gotten considerably larger and was about to affect her eyesite. We took her to Dr. Richard Gregory at Celebration Health Florida Hospital/Institute of Aesthetic Surgery, where he immediately started lazer treatment. My heart was breaking to see such a tiny little baby have to go through this but Dr. Gregory was recommended as the best in Orlando, so we knew we were in good hands. She is now 14 weeks and two lazer treatments did not reduce the size of the hemangioma so we had it injected with steroids. It seems to keep growing and it is beginning to affect her eye when she sleeps. Sometimes the eye does not close and I am worried that the hemangioma will continue to grow. We are seriously considering having it surgically removed but I am worried about her only being 3 months old. If anyone has had an infant surgically treated for a hemangioma, please let us know.

name: Julie Willis
from: San Diego California
mailto: us4@cari.net
location: left ear/neck
Our daughter was born March 5, 1990. She was born 7 weeks premature and weighed 4 pounds 9 ounces. We first noticed her birthmark right off the bat but it was flat and she was red from birth so we quickly thought it was just perhaps an irritated area. Within 2 weeks right around her first check up we had watched it get fatty and raised and mentioned it to the doctor which at that time told us bluntly, Its a strawberry birthmark and it'll just grow bigger and bigger until it can't grow anymore and then it'll go away. She's 9 years old now and we have been fortunate (after moving from San Diego to Bremerton) to encounter wonderful people in the attempts to help our daughter. She was put on prednisone for a while during her first 6 months by the Pediatric Dermatologist in Oregon Health Sciences University in Oregon. We watched our first born little baby grow to a whopping 28 pounds at the age of 8 months due to the medication. We eventually ended up just letting nature t! ake it own course with her. We w ere literally "Blessed" since moving back down to San Diego to have met and be treated still by a wonderful Doctor! Doctor Dennis Nigro!! He's a part of a non profit organization called Fresh Start for kids. It all done by donation for children to have cosmetic surgery/reconstructive surgery at no expense. We watched our daughter have a growth half the size of her head as a toddler to a deflated area of skin at the age 4/5 to now.....reconstructed tissue...new ear lobe...Pierced too! He's wonderful and we still have a long ways to be finished but our daughter at least now feels normal(as she puts it).

name: Jayn Feyling
from: San Francisco Bay Area, California, USA
mailto: Feyling3@aol.com
location: Right side of face
I was born with a port-wine stain covering the right side of my face. I have worn make-up to cover it since I was 3-years old, and now, at almost 40, rarely do I go anywhere without the make-up. In the early 1970s, I underwent several treatments with the Argon lazer, but unfortunately, because the technology was in it's infancy, the treatments did little to correct the stain, and instead left several scars. Connecting with other people who have facial birthmarks, via the Internet, has been such a wonderful and rewarding experience. The understanding and support from those that can truly relate to shared experiences is a joy! Hopefully, with this support, as well as the advanced lazer technology, children born with birthmarks today will not have the same painful experiences in childhood that I did. I view my birthmark in metaphysical terms - it was given to me for a reason and certainly has been a defining aspect of my life. Years have enabled me accept it and t! o build on other parts of my bei ng in a positive way. Growing up, my mother used to tell me that my birthmark made me special because in reality it was a kiss from the Angels, who loved me so much that they didn't want me to leave heaven!! If anyone would like to talk about birthmarks, or share their experience, I would love to listen. Thank you for listening to me & for this wonderful vehicle!

name: jennifer
from: Viginia
mailto: Jennifer@home.com
my 6 year old daughter has a port wine stain on her cheek. She has had 22 treatments on her birthmark, it has helped alot. we are now living in Virginia, the treatments were done in California. I would like her to see that there are other children like her in the world, that would make a big impact on her. thank you for your support. Jennifer

name: Susan Lightfoot
from: Seattle, Washington
mailto: SHL1108@aol.com
location: bridge of nose (between eyes)
**This note is for parents with young children who have strawberry hemangiomas who are struggling with treatment decisions*** My daughter Emily was born 9/16/95 with a "scratch" between her eyes.We waited for it to heal when it turned more red and started to grow after about 2 weeks. She is now 3 1/2 years old and thanks to pusle dye laser treatment by Dr. Julie Francis at Childrens Hospital in Seattle, WA her Strawberry Hemangioma birthmark is almost non existant!! After hearing from pediatrcian after pediatrician that her birthmark would eventually fade (probably by 9 years old) I called a dermatologist when my daughter was 3 months old. I was referred to Childrens Hospital and within 2 weeks pulse dye laser treatment was started. The treatments were done approx. every 2-4 weeks for one year. WHAT A DIFFERENCE! UNBELIEVABLE. Every treatment I remember thinking--wow I can't believe this is working so well. It did take patience for the treatments to heal and go back again time and time again. I would not listen to the pediatricans who told me to "not worry about it". "It will eventually go away". If ! you have a young baby, try if yo u can to start as early as you can before the birthmark grows too much. That is what the doctor told us made this particualar birthmark hard to treat if you wait too long. We needed to stop the growth and treat with laser treatment. Our first baby was the most exciting thing to happen to us and I know like everyone here, strangers can be so incredibly insensitive. Children can be so cruel to children who look different. I wish I had this support board when I was going through this. I just found this now after 3 1/2 years. We thank God everyday that we found Dr. Francis. We think she changed Emily's life forever (for treatment of her particular strawberry mark). I am glad I did not give up when all of the peds. told us to not worry and not to treat. They all said to leave it alone. Looking at Emily today you would never know she had a birthmark. God Bless everyone and do what you think is best for your child whether it is to treat or not to treat. This is only my story.

name: Andrea Stockton
from: Boise, ID
mailto: djcjtex@jump.net
location: Under the nipple on her right breast.
We first discovered that Janae, 6 months, had a hemangioma when blood started leaking out of her breast. Her pediatrician, who has since been replaced, told me that it was from a scratch that I had given her when she was unclothed. The pediatric surgeon, diagnosed it as a hemangioma. The doctors want to wait and see what happens over the course of the next several months, but I am unsure of what to do. If anyone has had this specific instance or can share some additional information, I would sincerely appreciate it. Andrea Stockton--worried mother

name: Smita Khare
from: India, residing in US
mailto: smitakhare@hotmail.com
location: Buttocks
My daughter has this on her buttocks. Its about 1 inch in size. My daugher is 4 months old. The mark came after 2 weeks but is not growing that much, by gods grace. What are the chances that it will grow in future ?

name: g roberts
from: NC, USA
mailto: GEARROB@JUNO.COM
location: MIDDLE TOP-BACK OF HEAD
BABY IS 6.5 MONTHS. HEMANGIOMA SEEMS TO HAVE STOPPED GROWING FOR THE MOMENT. IS ABOUT THE SIZE OF A QUARTER, BUT THICK. DOCTORS SAY TO LEAVE ALONE. WORRIED ABOUT CHILDREN TEASING, ETC.. LATER. -HAS VERY LITTLE HAIR!

name: DAWN STANLEY
from: REIDSVILLE, NC
mailto: MALIBUS@VNET.NET
location: RIGHT SIDE OF FOREHEAD
MY DAUGHTER IS 26 MONTHS OLD AND IS BEING TREATED BY A PLASTIC SURGEON NOW AND HAS HAD 1 LASER TREATMENT AND ANOTHER IS SCHEDULE NEXT MONTH. THE SURGEON WANTS TO WAIT TILL SHE IS 3 1/2 TO COMPLETELY REMOVE IT.

name: Robyn Horton
from: Bossier City, Louisiana
mailto: hortons4@gateway.net
location: Nose
Carly is 2 months old. At one month we noticed her nose looked bruised and within days it started to get bigger. It looked like someone had punched her in the nose. Her nose has continued to get bigger and is narrowing her nasal passages. It has now doubled in size. We are trying to go to Arkansas Children's Hospital for treatment.

name: Carlos Hernandez
from: Downey, CA
mailto: csold@earthlink.net
location: Botton Lip and left side of face
I was borned with a little ball in the left part of my face between my ear and my eye and I remember that when I was about 6 years old that little ball developed and spread over my left part of my face and the botton lip and it turned between red and purple. My Parents took me to differents Doctors and I was treated with differents was Like radiation and some shoot that until now I don't know what it was. All this tretments were done in Mexico and I never see positive results. I consulted differents Doctor in Los Angeles Ca. and I haven't been able to find a solution. I was very happy to find out that there is a cure for this problems now. Please send more information on this . Thank You. Carlos

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