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port wine stain???

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port wine stain???

Postby suzic77 » Thu Mar 18, 2004 06:43 am

by suzic77 (40 Posts), Thu Mar 18, 2004 06:43 am

Have any of you heard of this. It is like a birthmark that is very dark and covers a large section usually on the head, face or neck? My daughter has one that covers 1/2 to 3/4 of her scalp. They are telling me that it is probably nothing, but that she will need a MRI to rule out anything serious. They tell me that if it is on the inside of her scalp she might end up having seizures. I am trying not to get myself all worked up, but it's hard to look at such a little person and not worry. If any of you have any info, I would greatly appreciate it.



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Re : port wine stain???

Postby tahoe4 » Thu Mar 18, 2004 07:02 am

by tahoe4 (251 Posts), Thu Mar 18, 2004 07:02 am

My daughter has a birthmark (hemangioma, sp?) on her head. We were told it would go away by the time she was a year old. She's 14 months now and it hasn't gone away and a while ago we were worried it was hurting her. So we had skull x-rays done to ensure it hadn't grown inward. The xrays turned out normal and all is well, although the birthmark is still there.

It's difficult not to worry about something so close to the brain, but they're probably just doing the MRI as a precaution.
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Re : port wine stain???

Postby paljane8 » Thu Mar 18, 2004 05:51 pm

by paljane8 (1416 Posts), Thu Mar 18, 2004 05:51 pm

Will you let us know how it all works out? Try not to worry.

Nancy Eastwood
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Re : port wine stain???

Postby annegarrett » Thu Mar 18, 2004 05:53 pm

by annegarrett (2525 Posts), Thu Mar 18, 2004 05:53 pm

I have heard that port wine stains can be linked to a genetic condition but I forget which one. My youngest has a large stain on the back of his thigh but no one ever worried about it--my understanding was that it was something to be investigated if it is on the head (scalp or face). I would call the nurse and ask them what sorts of things they are concerned about.

Take care and let us know what you find out.


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Re : port wine stain???

Postby suzic77 » Fri Mar 19, 2004 05:13 am

by suzic77 (40 Posts), Fri Mar 19, 2004 05:13 am

They are worried that it might be a part of Surge Weber desease. It apparently causes many problems. Her dr told me that it most likely was just a birthmark, but just to be sure. She is pretty jumpy. Even when there is no change in light, sound, or movement she will jerk her arm or leg. I don't remember my other two being that jumpy. There are a couple spots of it that stick up and are textured. I am waiting to hear from the major hospital, which is a few hours away, for an appointment. Hopefully, it will be soon.

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Re : port wine stain???

Postby hannahsmom » Fri Apr 02, 2004 07:14 pm

by hannahsmom (1141 Posts), Fri Apr 02, 2004 07:14 pm

My daughter Hannah (26 and a half weeker) has a red mark on the back of her neck at the base of her head. The NICU nurses called it a stork bite and said it would go away. It's still there two and a half years later but her hair covers it. I also have a red birth mark all over my right arm.

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Re : port wine stain???

Postby mom2hannah » Mon Apr 05, 2004 05:30 pm

by mom2hannah (4 Posts), Mon Apr 05, 2004 05:30 pm

My little girl (27-weeker) has a birthmark on the back of her head as well. The nurses called it a stork bite too and said that it would go away in a few months. It has been 7 months and it's still there. I am sure that once her hair grows in, you won't be able to see it. HannahsMom - want to hear something odd? Our daughters are both named Hannah, they both have stork bites in the exact same location and you and I both have birth marks on our right arms. [:0]
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Re : port wine stain???

Postby hannahsmom » Mon Apr 05, 2004 06:44 pm

by hannahsmom (1141 Posts), Mon Apr 05, 2004 06:44 pm

and both of our daughters were preemies! She is technically a 27 weeker too! In the NICU they labeled her a 27 weeker because of her maturity but she had not yet hit 27 weeks when she was born according to my original doctor's calculations. So there's a debate about what week she actually was. She weighed 1 pound, 1 ounce -- how about your Hannah? The NICU nurses nicknamed her hannah banana!

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Re : port wine stain???

Postby amym » Mon Apr 05, 2004 09:31 pm

by amym (354 Posts), Mon Apr 05, 2004 09:31 pm

My daughter has two large birth marks on the back of her head (hemangiomas, I think). I also was told they generally last 1-2 years. Please don't tell me these are a sign of potential problems ... as if we all haven't been thru enough yet!

Amy (28)
DD Delaney (born 11/26/03 at 37 weeks, PIH & IUGR)

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Re : port wine stain???

Postby suzic77 » Wed Apr 07, 2004 11:01 am

by suzic77 (40 Posts), Wed Apr 07, 2004 11:01 am

Apparently it is like a REALLY big mole. I can't remember what the exact name was (was just too nervous). It covers about half of her scalp and is mostly flat. It does have a few textured spots as well as one lump. They are doing an MRI to make sure the pigmentation is not reaching the brain. If it is only skin level, they are going to remove it, (when she is about a year old) due the risks involved with the size of it. They ysaid that if it stays there it could cause major problems later in her life, such as cancer. If it is under the skin, then they are not going to remove it and we will have to watch it carefully and watch for signs of seizures and it growing or changing color.
I really thought all of the worrying would be done after she was born. I won't know anything till after the MRI in May. I will let you all know as soon as I do. Thanks for the support through out all of this.


By the way, here is her hospital pictures.

http://www.growingfamily.com/webnursery/babypage_view.asp?URLID=5G2S1V1S3C

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