This is Anikka…
This is Anikka Bella (or Anibella, for short). Beautiful, isn’t she?
Anikka was born with a large, brown birthmark called a congenital nevus. Essentially, it’s like a big mole present at birth, only much larger than normal and, in Ani’s case, covering a large portion of her left cheek.
As Anikka’s parents, we’ll do everything and anything we can to make sure that Anikka has every opportunity in life. Unfortunately, in a society that places so much emphasis on physical appearance, we know that a large birthmark in such a prominent location presents sizable roadblocks for our daughter. In addition to the psychological issues, some studies have shown a link between congenital nevi and an increased chance of developing a malignant melanoma. With all this in mind, one thing is abundantly clear: the nevus has to go.
For the past year, we’ve worked with a doctor’s office in California in an attempt to remove the nevus through the use of various lasers. We did our homework well in advance and knew that the odds weren’t in our favor, but the alternative treatment option (surgical excision) scared the hell out of us. After six treatments and a couple consultations, it’s become clear to us that her nevus just won’t respond to current lasers as well as we’d hoped. That means surgery.
We’ve found a surgeon who can do the work and, if his before and after pictures are any indication, do it very well. The costs, of course, are very high. Our insurance doesn’t cover this type of procedure (out of network and, in most cases, considered “cosmetic”). Furthermore, the surgeon is located in New York City, meaning significant travel expenses from the Portland, Oregon area. Depending on the number of operations needed, our total costs will like be in the $20-30,000 range. That’s where you come in.
Primarily, this site is dedicated to sharing Anikka’s story with the rest of the world. We want everyone to see our little princess and to know what she’s going through. We’ll also provide updates as her story progresses to, through, and after surgery.
At the same time, we’re hoping to put a dent in that $30,000 price tag and try to get this thing taken care of before Ani starts preschool. There are many different ways you can help, several of which can be found by clicking the How to Help link at the top of this page.
Thank you for taking the time to read about Anikka’s story. We couldn’t do this without the help of our generous friends, supportive family, and kind-hearted strangers. Again, thank you.
Justin, Silja, and AniBella
Posted in Uncategorized
December 6th, 2006 at 12:10 pm
Justin & Silja,
We have a son that is very much like Ani.
We are in the homestretch of his nevus removal.
You sound extremely with-it and prepared. I know there are different health care insurance packages out there, but I wanted to alert you to the fact that our doctor has gotten all of our care covered by insurance due to the melanoma risk a congenital nevus presents.
I hope that you can get similar consideration.
She’s a doll!
Best of luck.
Jon
December 6th, 2006 at 1:12 pm
Our bosses are very skilled surgeons who have done dermatological surgeries on children before. We are in Florida. Please contact Laura Richards at 727-847-3992 and speak with her about the possibility of donating services.
Thank you.
New Image Dermatology.
December 6th, 2006 at 1:28 pm
Stumbled across your site, you have a beautiful daughter! We hope our small gift helps. Merry Christmas!
December 6th, 2006 at 3:00 pm
Perhaps you are unfamiliar with a New Orleans Saints quarterback named Drew Brees who happens to have a rather prominent birthmark on his cheek. Seems to me that it hasn’t really hindered him all that much, and he seems to be doing pretty well for himself! If you feel like this surgery is necessary for your daughter, well that’s your choice, but isn’t it selfish to grovel for other people’s help to cosmetically “fix” your daughter?
December 6th, 2006 at 9:08 pm
UnshallowHal:
The links between congential blemishes and skin cancer are strong so this is less cosmetic and more a precaution. This isn’t groveling, I don’t believe, but damned if I wouldn’t grovel, beg, steal, knock down your grandma, and gauge out my eyes for my kid.
She’s a beautiful child! Good luck. I’m sure you’ll find a doctor who will help you pro bono.
signed, A Louisianan Who Knows That Brees Would Rather Be Birthmarkless
December 6th, 2006 at 9:29 pm
UnshallowHal: Perhaps you didn’t fully read the story above, Her parents are worried that the birthmark will turn cancerous, which is a very valid concern. I understand that you think purely cosmetic surgery is unnecessary (and i agree), but this is not the case with some birthmarks. I myself just had a rather large birthmark on my back removed even though i actually liked it. Why you ask? Because my doctor told me that it also increased my odds for cancer.
I would also think that surgery like this would best be preformed young, so the risk is reduced even further.
She’s a beautiful little girl and i hope you are able to afford her surgery.
Good Luck!
December 6th, 2006 at 9:41 pm
I gave what I could, sorry it couldn’t be more. I’ll say prayers for you all tonight
December 6th, 2006 at 10:37 pm
I have friends with prominent facial discoloration. These so-called “harmless” things caused them to be persecuted and shunned all their lives, and they all ended up being psychologically damaged.
Oh sure, they’re “stronger for it.” So strong that they are bitter and rageful people as adults.
That being said, there’s downsides to surgery: there will be scars, and there will have to be multiple followup surgeries to make the scars less prominent.
The thing that really sucks is that even with a zillion dollars to throw at it, there’s no perfect solution.
December 7th, 2006 at 6:08 am
First off…cute kid. With or without the birthmark, cute kid. That being said, I urge you to think long a hard about what you are going to subject your daughter too. I myself have a port wine stain on the upper left side of my face. It runs from around my left eye, down to just below the left side of my upper lip. I have had this birthmark all my life obviously, and in all honestly I think it makes me who I am. Sure there were times where kids picked on me and there were times where i felt like the “ugly duckling”, but throughout it all I never lost sight of who I was. As technology advanced in the areas of laser removal, I have gone back and forth with the ide of removing it. I can honestly say though that I have never once thought of removing it out of vanity. With the port wine stain, any nick, cut, or scratch will bleed profusely. Hence the reason I wanted to remove it. Hoping that by removine the surface layers of the mark, it would keep me from bleeding if cut or scratched. Well come to find out through my research, they can remove the “stain” but the fact that I will bleed will still be there. So I said no to removing it. I would just ask that you think very seriously about what you are doing. Is the removal for YOUR sake as parents and what other parents will say about your daughter, or is it truely for your daughter? My birthmark has never ever held me back in anything I have accomplished in my life. It never will. Personality and attitude are what carries us through life. Please e-mail me to find out more about my story, the minor struggles growing up with the stain, and what you can expect for your daughter. All I ask, is if the birthmark was not meant to be there, then why IS it there?
December 7th, 2006 at 7:54 am
I grew up with a birthmark on my face and wouldn’t wish it on anyone. It might have made me stronger, but if I didn’t have the birthmark, I wouldn’t have needed the strength. Best of luck to you and your little girl; I’m glad you care enough this for her.
December 7th, 2006 at 1:53 pm
Gwafunk,
We definitely share many of the concerns you mentioned. Anikka is two, nearly three years old and we’ve put aside the idea of surgery for a long time for some of these very reasons. We let it be for the first year and a half of her life, but the chance of it turning cancerous (however miniscule) was unacceptable to us.
Really, though, we’re concerned about her psychological well-being just as much as the physical. Believe it or not, I’ve asked myself many of the questions you posed (whether this was for us or for her), and I’m very confident that our motivations are sincere.
When I look at my daughter, I can’t help but smile to myself. I love her more than I could ever say or write exactly how the way she is. That said, though, if there’s anything we can do to help her out in life… anything that will make her life easier and more fulfilling… we’re going to do it. The same can be said for our son. He may not have a birthmark to deal with, but we’ll do whatever it takes to make sure he does well in school, is a good person, has a chance to attend a good college, etc.
Yes, there are still times that I doubt the decision. On the one hand, I wish Anikka was old enough to be able to speak for herself and tell us what she wants us to do. On the other hand, the best time to do this kind of surgery is when she’s young enough to minimize the mental and physical scars. If we wait until she’s old enough to decide for herself, it could be too late.
We’ve heard from several people born with various birthmarks, nevi, and/or port wine stains in prominent places. While I certainly respect your decision to forego any type of treatment, it seems that the majority of people growing up with any of the above would have chosen otherwise if given the opportunity.
I’m glad to have your feedback, too, by the way. We absolutely want to consider every possible point of view and outcome during this process, so stories like yours are invaluable to us.
Thank you for taking the time to visit and for sharing,
Justin
December 11th, 2006 at 12:31 pm
I knew Justin as a small boy and am best friends with his mother Nancy. I really hope all these folks writing actually have children. Only a parent truly knows what lengths we’ll go to for our beloved children. No one has THE right or THE best answer. It’s the parents decision based on reseach, doctors advice, perhaps prayer, and what their hearts tell them to do. All we can do is offer our support and prayers. Yes, Anikka is a little beauty and cancer is a real threat. Justin, I believe you and your wife are really doing the right thing. However, there was some good adive about checking on clinics that might do the work for free/reduced costs so I would check on those avenues as well. Good luck and Happy Holidays!
December 12th, 2006 at 11:53 am
My son, Justin, loves his daughter, Anikka, more than life itself (as does her mother, Silja). They have done extensive research about congenital nevus and how there is an increased chance of developing a malignant melanoma. They are well aware and informed of all the pros and cons that come with this type of surgery. There is nothing that they wouldn’t do to make their precious little girl’s life the best it can be. By thinking of her future, I believe that having this surgery is in Anikka’s best interest. I know every parent out there would do anything to prevent the possibility of their own child getting cancer. Having had a brother die of cancer, I know what it’s like to go through the grief and pain that comes with cancer. I wouldn’t wish that upon anybody. I would never want my son and daughter-in-law to have to experience the pain of losing a child to cancer. It is devastating. I am glad that we are able to help in any way that we can. I am so very thankful and grateful to all of you that have been able to help with donations and with prayers. I know this has come from your hearts. Thank you so much.
December 13th, 2006 at 8:24 pm
I believe that if what I hear about the surgery is true and the scars are minimal than it should be perfectly fine to go through with it. As for those of you who are against it without living through it maybe its for the best to keep negative comments to yourself.I’m sure it was hard enough for the parents of this precious little angel EMOTIONALLY & FINANCIALLY may all your prayers and wishes be granted.
Love you all very much and thanks for your help. Anikka’s uncle Jordan
December 14th, 2006 at 6:52 pm
Our Prayer intercessors
@ Shekinah life center
are in agreement with you and your family that the very best be done for this precious one
WE COME TO OUR FATHER OF ALL CREATION IN THE PRECIOUS NAME OF YAHshua the Messiah
That we can do nothing in ourselves,… brings us as servant’s boldly before You
We lift up this petition, to you Lord, In the belief that you may be Glorified. We call for full healing and restoration in the name of Messiah YAHshua
giving glory to Yeweh,” the EL’ELyon of all creation.
February 2nd, 2007 at 12:06 pm
What a beautiful little girl! I have a 10 year old neice who I love dearly who has been through so much, due to her Giant Hairy Congenital Nevus.
At birth the nevus covered the entire left side of her face, including her eye. She has had 5 reconstructive surgeries using expanders. She has extensive scarring and the nevus still remains over her eye area approx. 5″x3″ We are still searching for more to be done.
I have recently come in to contact with a Doctor in Tucson Az. He has told us that we may be able to have insurance not consider this cosmetic due to the recent changes. Kayla’s remaining nevus is becoming “worty” and blackening.
Although her current plastic surgeon said she didn’t need a biopsy, we found multiple other Doc’s including the one out of Tucson who disagrees. Kayla is showing changes in her Nevus because she is pre puberty which indicates her risk of melanoma is very high. So, if we can prove to the insurance company, through the proper Dr. recommendations we may not have to pay out of pocket and believe me what has been done so far has wiped, most of the family who could help with medical expenses, out.
Please feel free to contact me,
I know over the last 10 years
it helps to keep talking. Someday we’ll all find out the right answers
February 27th, 2007 at 3:45 am
Anikka is a beautiful little girl. Thanks for sharing her with us.
I wish you all the best in your journey to have Anikka’s birthmark removed. I fully understand why you’re doing it (both psychologically for her as well as the cancer link). (((((HUGS)))))
Try not to take to heart those who are questioning you and thinking you’re doing this out of parental vanity. Even the writer who has the large facial PWS… I’m sure if the lasers they have now had been available when he was a child, his parents would’ve chosen to help him rather than to let him live his life so marked (not to mention the possibility of PWS scaling and/or the glaucoma link). You are doing what you believe is right for your daughter. This is not a small birthmark that will go away on its own. It’s a large nevi and in addition to the cosmetics of it being on her face, there’s the increased risk of melanoma. You are doing the right thing for Anikka by having this mark removed.
I wish you all the best!
March 7th, 2007 at 10:28 am
Thanks for the comment, Laurie! I took a look at your daughter’s site and we can definitely related to what she had to go through with the laser treatments. It’s so hard to see your child go through that…
Her results are amazing, though! She looks fantastic! Her story and pictures are even more evidence that Dr. Zide is the best option for Anikka.
And in case anybody missed it above, you can find Laurie’s daughter’s story here:
http://purple31-ivil.tripod.com/Melissa_hemangioma.html
Thanks for sharing!
Justin
March 30th, 2007 at 2:59 pm
[...] 1. Spread the word! Tell people you know about Ani, congenital nevi, and this site. It’s as simple as clicking this link: http://www.anibella.net/2006/12/02/this-is-anikka/email/. [...]
April 21st, 2007 at 9:24 am
I am like AniBella. I, have a congenital nevis, or birthmark, on my right shoulder. At school, none of my friends know about it. I can hide it under my sleeve. For me, teasing is the problem, so I stopped informing other students about it.
May 2nd, 2007 at 10:00 pm
Have you tried contacting the Shriners Hospitals yet?
May 3rd, 2007 at 9:07 am
Don,
We haven’t contacted the Shriners yet. I changed jobs a couple of months ago and the new employer has a 90 day probation period for new employees. As a result, we’ve had to push back the schedule since I wouldn’t be able to take time off from work.
We hope to visit Dr. Zide in New York for our first face-to-face consultation this summer. At the same time, we’ll be following some of the other leads folks have suggested.
Also, we found at least one other parent who had some success getting her insurance company to help out with some of the expenses, so we have some renewed hope there. Nothing to guarantee the same steps will work with our company, but we’ll definitely pursue that option again once the insurance benefits from my new employer kick in.
Thanks,
Justin
May 9th, 2007 at 12:56 pm
Hi
I’m from England and gave birth to my precious fourth daughter on valentines day 2006. She was born with a large bathing trunk nevus and has since popped out with about 300 satellites. although almost covered with nevus she is a beautiful child. Sienna (her name) was operated on at 5 weeks. She spent 4 days in intensive care and received a blood transfusion in the process. A great deal of the nevus was removed, but the pigment has seeped back through making the treatment almost pointless. You talk about having your daughters nevus removed as a precautionary measure. The pigment is also often found in the kidneys, liver and other organs so removing the outer layer does not take away the risk of melanoma. I would encourage you to do more research and look into a condition known as ncm (melanoma of the brain) I’m thinking that you probably have already. If you have then you would know that you cannot take away the risk of melanoma to her. I would never again put my baby through the suffering of surgery and urge you to speak to hundreds of others who have also been operated on unsuucessfully. She is a beautiful little girl and looks like she has a real spark about her. Good luck and I hope you make the right decision for you.
June 4th, 2007 at 8:26 pm
Like Bianca, my 4th child was born with a large congenital nevus. it cover his whole left arm. He was born 3-9-2006. I feel what you are deciding. we have heard comments from “king kong” and “monkey”. But as a family we call it his warrior arm. and tell the other kids to watch out for his left hook. I have debated about surgery but i also heard too many stories like the one above. I am still researching. but as of now, there are too many stories of the nevus coming back. I don’t know if it is worth the pain and scars to put my child through. I’ve also heard a storie of a child that had a trunk nevus and her parents decided surgery. because the nevus can grow within, it grew into her spine at the age 4 and caused a fatal siezure. She spent her first 4 years of life in and out of surgery, in pain. I know as you do, that you want your child to have the best life you can give them. so question, is it worth the pain and scars? of course each person nevus is unique. and your daughter wouldn’t need as much surgery. I was told that the ball is in my court on how people percieve him. Through our families positive energy. He will live a great life with the nevus. But that is not to say we may remove it later. He is only 1yrs old. Like I said, I am still researching. So please keep in touch of what you decide to do and how things work out. And who is your doctor? because mine said surgery is pointless but that is only one doctors view that I have. Please keep in touch with me to assit me in our decision with my son. I am glad I came across this site. Thamk You.
June 25th, 2007 at 9:20 am
hi.my name is paul and i come from manchester in england im 16 and was born with a birtmark around my eye and abit of my cheek it covers my eye lid and under eye.i have had laser treatments when i was younger but they didnt seem to work.The doctors said my brithmark was thick and i would av to have a skin graph i left it for a year and decided not go threw with as it was part of me and i wouldnt look the same and would be strange not see’in it lol.when i was younger my mum would av people walking past and sayin to her have you hit your kid and people saying to me thats a big blackeye ect.i still get it now at 16 but i cope with as i have built up more confidence in myself as i have got older.i hope you like reading this.if you want to no anything else just email me.i will come back on to this site agen to see if anyone has replied to my comment.take care
July 12th, 2007 at 1:57 am
hello
my child has a hairy nevus on her left arm, she is 4 now
we just came back from LA, children’s hospital
doctor was great
he told us it is better to remove as soon as possible
July 16th, 2007 at 6:24 pm
Hello, I was born with giant nevus, bathing trunk. My mom made the decision to have expanders and grafts when I was a child (b. in 1986). I haven’t shared this with her or my childhood surgeon, but because of the scars I sort of wish it had been left alone.
July 16th, 2007 at 7:21 pm
Thank you for sharing your daughter’s story and ADORABLE photos with us.
I was born with bathing trunk nevus and I would be lying to say it hasn’t affected my life. Whether I say it’s affected my life for the better or the worse depends on many factors and my day.
In hindsight, if I had the choice to tell my mom “Yes, go ahead with the surgeries,” or “No, let my birthmark be,” I would have told her the later. I know she did her best, however.
Thank you,
Lianne
August 8th, 2007 at 4:42 am
hi, she is a cute little thing but i cant help but not notice the birthmark maybe thats because i am 24 and was born with giant hairy nevus from the top of my neck to the bottom of my back surrounded by loads of large to tiny ones from my face to my foot. my birthmarks are too large to remove as i have no clear skin at all. However i never got bullied at school went on to have two beautiful birthmark free children and a lovin partner. i have every faith her small birthmark will not effect her life at all she can wear whatever she likes and any surgery she may have will be forgotten when shes an adult.
August 26th, 2007 at 7:52 am
interesting dialogue. we should not belittle the potential impact that facial birthmarks (melanocytic or vascular) have upon psychosocial development. some people are stronger for it; others are devastated. as highlighted above, these feelings can change day to day. parental direction can have a significant impact upon the outcome.
the risk for cancer within a small to medium melanocytic nevus (less than 20cm in greatest diameter in adulthood) is estimated to be 0-5% and not until puberty or later. laser doesn’t reduce this potential.
for giant nevi (greater than 20cm in adulthood), the risk is 4-10% and this can occur at any age.
most insurance companies will cover the excision for birthmarks especially those with malignant potential.
May 30th, 2009 at 8:20 pm
hi, my name is tabbitha and i am 17 years old. i had a birthmark just like your daughter. mine was a large congenital nevus on the right side of my face. the doctors used tissue expanders to remove a large portion of the birthmark but he left a small piece of it next to my eye. after 2 year i am looking into gettingthe rest of the birthmark removed with either skin grafts or more tissue expanders.
August 8th, 2009 at 7:35 pm
Thank goodness for the internet…and for you having enough strength to post this on here. My beautiful daughter is almosy 4 months old and was born with a dime sized congenital nevus that appears to be “falling” out of her right eye.. like a big tear. Now just 4 months later it is twice as big and much darker. I am so torn. I think that removing it would cause significant scarring because it goes into the eye. Would it help to remove just part of it? I have no idea whether or not laser treatments would even work. My heart just breaks for her.
August 22nd, 2009 at 9:43 pm
Hello
I have a daughter named aubriella with Congenital pigmented nevus. Aubriella is now 19 months old. Unlike your daughter who is beautiful by the way, my daughters nevus is on her left buttocks cheek and I am very scared about the risks of cancer. we are a low income family so she has medicaid which will cover the surgery but I have been wrestling with whether to get it removed or not. But lately we have been leaning towards getting the surgery since with where it is she keeps getting heat rashes on it very badly due to the summer heat in florida. With nevus especially thick like my daughters is its hard to cool down that area. I hope everything goes well with your daughter.we’ll keep your family in our prayers as I hope you’ll return the favor.