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Old 08-13-2007, 10:20 PM
sahmby28 sahmby28 is offline
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Default reactions at birth from parents?

My daughter just had her first birthday. I, of course, reflected a lot on her actual birthday.

I remember being sort of numb to the idea of the birthmark. Her entire face was purple. I was told about her face before I even saw her. They said it might be bruising or a birthmark, we would know more later. I remember referring to her as my purple turtle, out of nervousness. The need to joke about it. I had family show up at the hospital within an hour of her birth and I didn't even have time to process the fact that we were going to have issues to deal with. I remember starting to think about kindergarden and would it be hard to deal with. I wanted to cry for her, but I couldn't because it was supposed to be a happy day and everyone was there. I also remember thinking "I wonder if anyone thinks I didn't make them a perfect granddaughter." I didn't want people's pity but I didn't want them to pretend either. I am still mad that my mom kept telling everyone it was just a bruise and no matter what that is the story we are sticking with. She even called me the next day to reassure me that it was a bruise. I then felt guilty for weeks about being sad (for her, not for me) when she was born instead of happy.

I don't think I had anybody who wanted to deal with the emotions that came with it. They all wanted to talk about the specialists and all the possible complications. We had no idea there could be any because I refused to look into them. I figure the doctor was on top of it, making referrals right away to an opthamologist and dermatologist and sent us for an MRI. I am normally very pro-active when it comes to my health and research anything and everything. I think at that time, I could not handle it. I honestly still don't think I can handle it. I would rather deal with it when it comes along than worry about what could be.

I did not expect the swelling that came with the laser treatments. I have had to lay down the law about people talking about her birthmark and how many treatments she has had like it is normal conversation. I don't want Ava's whole life to be about her birthmark. I could probably write pages and pages.

Anyone relate? Have their own stories? Different perspectives.
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Old 08-13-2007, 11:55 PM
nickbar nickbar is offline
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I feel the same way about anyone in my family talking about my son's hemangioma. Even though my family was trying to be very supportive, I started to hate when they would visit as the first comment was about his b-mark. My father is very sensitive, so I didn't know how I would approach this with him. I believe my sister helped me with I remember not long after I confided in her about how it made me I worried about Nicholas starting to that would make him father stopped commenting. There was a moment that it all hit me how I felt... my father was in town and had his boss with him. They stopped by my house to say hello. My father introduced his grandsons.. "this is Brett he is the smart one,...this is Antonio he is the athletic one,...this is Nicholas and his birthmark..." Don't get me wrong, he meant no harm...he wanted to hurry up and make the birthmark comment as if he was protecting me from being asked or protecting his boss from feeling unsure about it. But, what it came down to was reality that Nicholas was getting older and I didn't want this birthmark define who he was.

Don't feel guilty over your feelings...they are real and this was not what you expected at birth.


Corinne Barinaga
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Old 08-14-2007, 04:21 AM
pichpaw pichpaw is offline
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I hesitate to say I relate b/c my son's H is very small so I can't fully understand altho i empathize so much. But I relate because my babies are (fraternal) twins and the one with a H is named Ben and at first when the H was tiny and people (esp. kids) couldn't remember which was which my mom said "remember B for birthmark is Benjamin." It didn't bother me when his H was tiny but as it grew and people kept referring to that it hurt me that he was becoming known as the baby with the birthmark when i just want people to think of Benajmin the beautiful sweet baby, not the one with the birhtmark. So I really understand how you're feeling. I hope Ava (beautiful name!) will just be known for being her. Happy birthday Ava the beautiful!
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Old 08-14-2007, 07:02 AM
The Houston Mama The Houston Mama is offline
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I cried when I read your post. I feel so much for you but I cannot say I know how you feel because I am not the parent of a child with a birthmark. But I am a parent with a large birthmark. I just want you to know that it is going to be o.k. Your child will always be different but there is hope in the fact that she has a mother who loves her so much. My mother did not know I had a birthmark until I was born. There was no mistaking it for a bruise as it covers most of the left side of my face and neck. She has felt bad her whole life. She always questioned what she did wrong. Did she have a virus, did she fall, did she fail me in some way? That does not have to be your guilt. Your daughter will know that you did not fail her. She will not blame you. More than likely she will accept it and learn how to deal with it in her own way.

Life was not always easy for me because people can just be mean but there is hope. I was always taught that being different was o.k. I was taught to be tough and not let things always hurt me. My Mom even gave me phrases to arm myself when someone stared too long or said something mean. You can do that too. Help her understand that she is a strong person and can be anything she wants to be. Nothing has to hold her back. Besides who wants to look like everyone else. You did not fail her or anyone else. You have given her the opportunity to be someone amazing and different. I do not think my birthmark has hindered my life in any way. I feel that it has inspired me. My life is a success.

I was ALWAYS the girl with the big birthmark growing up. But you better believe no one ever forgets me. They always knew who I was. Usually after that comment was made came the next comment about me. Ya she is really nice and sweet. It does not have to define her. It is a part of her but it is not her heart and not who she will become.

I have always had a big support group around me. I always tell my family and friends who say they don't notice my birthmark anymore it is because they love me so much. Be that for your daughter and really she will need nothing else.

Don't let her know of your guilt. She will in turn feel like she has failed you.

I have such an overwhelming desire to help others through this difficult journey. I hope this has helped.

Much love

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Old 08-21-2007, 10:25 PM
robolynn29 robolynn29 is offline
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I have to say that I have felt many of the same things. I had no idea that my baby would have a birthmark that covers almost all over her body. It was a shock and surprise. I was trying to digest everything and doctors kept coming in to look at her and talk to me and then I had a stupid nurse suggest that perhaps she had the "vanishing twin" syndrome. What an idiot. I'm hormonal, my baby is covered in a birthmark and I have people playing the guessing game with her and coming to look at her like she's some kind of freak.

I've learned that people can kiss my bottom. People look at her all the time - especially after her laser treatments. I even made a couple of little onesies for her to wear. One says "what's the matter, never seen a spotted baby before?" and the other says "didn't your mother teach you its not nice to stare?" Most of the people who ask me about her are curious. Children ask me all the time - its natural curiousity. I get a bit irritated when people reassure me that "don't worry, it will fade" like they know more about her birthmark than I do. WHATEVER.

But, her birthmark will not define who she becomes and what she does with her life, but it will play a signficant role in how tough or insecure she might become. My job as a parent is to protect her and do the best I can to help minimize the birthmark, but then like Mel said about arming her with responses to people's questions or comments.

I often don't "see" the birthmark just like many of my family and friends who surround her often look past it and see the beautiful little girl with the terrific personality. I really don't care what other people think to be honest.

I grew up with scoliosis and wore a back brace for numerous years. (think Sixteen Candles) I mean, a movie made fun of me, so why shouldn't everyone else? It made me a tougher person and less worried about other people's opinions. I hope my daughter's birthmark will do the same for her.

It is natural to be worried about your child's future, but I personally look around and see that I am blessed to have a healthy child - considering there are children dying of other diseases. Sometimes its best to look at the positives and not the negatives.

I hope I've said something that might have struck a chord with you. You are blessed with your child, just like I am.

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Old 08-22-2007, 10:56 AM
Ella'sMum Ella'sMum is offline
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I just read your messages and it really is nice to know although we feel alone in trying to deal with this as parents we are not... My daughter has two H's on her face, both very red and noticible. When they first started to grow i had no idea how big they would get (they are still growing) and how insecure they would make ME feel.

Taking my beautiful girl out to the shops or just out in public is sometimes a struggle, especially when im by myself, because as much as i dont want to feel like it i just feel embarrassed. Everyone stares at her and i wonder what they are thinking (" oh dear what is that horrible growth on that litle baby's face??") so in turn i try to cover her up as much as i can ( although i know i should be showing her off).

Although i tell myself almost everyday that there are way worse things she could have wrong its still hard and i always ask God "why her??"

Family gatherings are also hard somethimes, my boyfriends father commented when we were taking photos of her, something about how red they looked (not to be mean but i took it a little hard) and how she will get 'ripped' at school, and with a relatives wedding coming up im not looking forward to it one bit.. But as they say.."the show must go on" ( does that make sense, im not sure).

If anyone would like to chat feel free...
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Old 08-22-2007, 02:24 PM
samanthasmom samanthasmom is offline
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Thanks to everyone for all of these posts. Sometimes I feel guilty for some of my feelings over the past few months and seeing that I am not alone is very comforting and helps me a lot.

When our daughter was born we were shocked and terrified. All of the specialists appointments in the first few weeks and dealing with a newborn (our first) was so overwhelming. In the beginning, we rarely took her to the store and if we did she was covered up well-it was Winter at that point. It was different in the Summer though. Too big for the baby carrier with the hood and a blanket. Time for sleeveless clothing and bathing suits. I would have never taken her out right after a laser treatment, I'd wait until well into the healing period. It was all so hard for us.

Now, 10 months later, things are so different. We frequented the pool this Summer until the darn August humidity kept us in the AC (I just can't handle the humidity). We go to fairs, picnics, for groceries, to malls and to restaurants and if someone actually asks about it I try to be as nochalant as I can about really could be so much worse.

Robin-My husband and I laughed about your post on the people who see her and say "it will go away". That just happened to me at a restaurant on Sunday. A lady said to Sam "someone was bit by the stork-it will get better". I told her it's a port wine stain and she get's laser treatment for it at the hospital. My husband wanted to know if she was a nurse or something. I know she meant well but---whatever.

Sam will be one in October and we are going to celebrate!!! I am so proud of my beautiful, sweet girl. We have all come so far even though we still have a long road ahead of us and go through periods of being scared and uncertain. Maybe we'll even stop at the mall on the way home from her next treatment. :-)

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Old 08-25-2007, 06:01 AM
Aprilsmom Aprilsmom is offline
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I remember the first numbing weeks. She was my third girl and after the delivery I was told she would be my last baby. They brought her in and told me she had a bruise on her right temple/forhead and a heart murmur. At the hospital I focused on the the heart 2 days later the Dr told me it would close on its own and it eventually did. Then I noticed the "bruise" on my baby girls face wasn't going away. After 4 months and her second peditrician I found out what it was. A PWS and it wasn't ever going away. I am starting to cry just thinking about how that felt. All the nights I couldn't sleep, on the internet finding out all I could. Worrying, what would her life be like, prom?, treatment?, complications?, was I a good enough mom to give her what she needed to not focus on the PWs but who she was?, massive amounts of questions and concerns. Not even knowing who or what to ask. Everyone staring, telling me it would go away. Like Robin I thought, why on earth would you think you know more about my daughter then I do. It's not going away it might get lighter but it is not going away. People can be rude and the comments drove me crazy at first. I couldn't stand when they would just stare and whisper. I would rather them just come out and ask. We took her everywhere. I did have to explain to my 3 1/2 year old why people always asked and starred but I looked at it as practice for when I have to talk with April about it. I was lucky our families were/are awesome. After we explained everything about the PWS and treatments, they asked questions and that was it. Everyone gets a call that we are having laser and everyone gets update calls and emails/pictures on her recovery. They don't talk about it unless I bring it up.

My April will be 2 a week from today. I only occasionally worry about it now. She has had 5 treatments and will need 1-2 more. It is light and we get no more comments in public unless she has just had laser. My grandmother came for a 2 day visit last week. Because she doesn't have the internet she doesn't get update pictures. She hadn't seen her since her last treatment so I told her a couple of days before to remember and look at how light April's PWS was. After the visit when she was home I called and asked her if she had noticed how light the PWS was, she said "I forgot to look". I have hope. Our family and friends like us don't even see the PWS or think about it. We all see her. I know when she gets older she will have friends that see her and not her PWS. The birthmark is part of her but I know it will not define her. As her mom I will do everything I can to make sure of that.
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Old 09-21-2007, 06:52 PM
QCharmaine QCharmaine is offline
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My oldest is six, she was born with a hemangioma on her cheek that started at 4 weeks of age (looked like a zit) and grew into a red dot. It has faded a lot, but is still there. She knows what it is and she is proud of it, she at this time does NOT want laser treatment. This may have to do with the fact that I have a "Cindy Crawford" like mole, and I think she identifies with me.

My third child was born 5 years later, as soon as they handed Carson to me I noticed the purple mark, they said it was just bruising...but I knew it was not. We were sad for him and scared about complications, but also overjoyed to be blessed with this little guy. We are doing the best we can to improve his birthmark and we of course love him to death, he has a big sister and brother who will always come to his defense. Plus he's a big guy...I don't anticipate him being picked on. He doesn't get too many comments normally except of course after PDL, we get LOTS of stares and comments, it's been 7 treatments and it doesn't get any easier. I just figure we are doing the best we can for him and we will give him all the love in the world, I hope that he is just like his big sister who is confident and proud of who she is.
We don't talk much about my daughter's birthmark, but we DO tell her what gorgeous hair she has, what pretty eyes...she is truly a beautiful girl inside and out.
Carson at 11 months...he's too young to accept compliments, but really nobody in my family (even extended) focuses on his birthmark. He is a chubby adorable little fella with an infectious personality.
All children, birthmarks or not are going to have something about their appearance that bothers them, for me it was not being thin enough in high school. I think it's important to teach our kids to accept themselves for who they are, but at the same time if something is bothering them, do what you can to fix it, and if it can't be fixed then accept it.
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Old 11-15-2007, 01:03 PM
tiny dancer tiny dancer is offline
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i remember the first time i noticed my daughters pws. she is my 2nd girl and you think you know it all 2nd time around! she was born by elec cs but it was planned for the wk after except my waters broke at 37wks and she was born around 20hrs later at 5.35 in the morning! as her pws is on her leg and she was taken away washed and dressed before handed back to me, so i didnt see it until i changed the very first nappy. i remember thinking god what is this? no-one up to that point had told me that she had a birthmark, so i was very scared about what it could be. so i called the nurse who then told me it was a birthmark. but within half an hr i accepted it and just carried on as normal. a couple of hrs later she was checked by the pediatrician, who then said "your daughter is perfect in every way but she has a fairly large extensive birthmark on her left leg" like she is perfect but......! shortly after that a dermatoligist came to see my daughter and she couldnt have been nicer to us. she sat on the bed and told me what was involved and how my daughters pws will progress. from that moment on i have learned that my daughter is unique in every way and this is part of her. today she is 18mths old and into everything! we call her the boy we never had,as she pulls everything out, climbs everywhere, says no to everything...........typical toddler i think!!!!!!
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