greetings and questions - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Port Wine Stain Help > Port Wine Stain Help and Resources

 
 
Thread Tools Display Modes
Prev Previous Post   Next Post Next
  #1  
Old 01-14-2013, 12:22 PM
newgramma newgramma is offline
Junior Member
 
Join Date: Jan 2013
Posts: 3
Default greetings and questions

Hello,

What a wonderful community!

The reason I found it is because my granddaughter was born Monday, Jan 7 and the attending pediatrician has scared the pants off us all.

Our granddaughter was born with extensive red birthmarks. I'm not qualified to estimate,but probably over 50% of her body. Bc some marks were over her eyelid, she gave cautionary instruction about glaucoma, syndromes, etc. We have been internet junkies since.

When the neonatal pediatrician examined her, she said, "I thought I was here to see a PWS... this is like no PWS I've ever seen." An appt with a pediatric dermatologist is scheduled for tomorrow. Of course, in the meantime, we are pouring over the internet!

She has spots on her nose (3), across her left cheek, from her left temple and across to the back of her head. There are spots on her left hand, on her chest, most of her back, all of her butt, almost her entire right leg. It's a lot.

However, if she is calm and warm (not hot) they are invisible. It is only when she cries that they turn red. Quite red, with specific limits/borders. She seems to be strong (already lifting her head and shoulders 1st day!). She is quite solid and was 2 days overdue (not unusual).

Zero complications otherwise.

I will post pics as soon as I can get daughter to cooperate. She is in panic/ignore mode right now. I am too, kinda, but feel a responsibility to research preemptively and prepare for the future if the first pediatrician's cautious appraisal was correct.

I think everyone in my family had angel kisses, stork bites, moles and cafe au late. We are all western european descent, non-Hispanic. I have had numerous capillary "thingies" (like pinpoint dots that have come and gone) throughout life, and my hubby has a little genetic redness on his cheeks/jowels. Daughter (mother of baby) has hives/mottling when heated or under duress.

I can't find any instance of this level of extensive coverage of a birthmark!

Perhaps my searches are sophomoric, and that's why I can't find anything like what our new grandaughter looks like?

New Gramma (3x)

Last edited by newgramma : 01-14-2013 at 09:09 PM.
Reply With Quote
 


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump