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NMG 05-02-2010 05:32 AM

New Port Wine Baby!!!
Hello all. I am the father or an awesome baby boy that was born on 4-28-2010. My wife and I decided to be surprised by the gender of our first baby (which I hear is rare these days!), and were thrilled to have a son. Shortly after delivery we were shocked to see a rather large PWS on the right side of his face. It starts on his lower lip and extends up his cheek, on his upper eyelid and up his temple to his scalp. Unfortunately for us, our doctor sent us on a roller-coaster of emotions by immediately telling us the possible links of port wine stains to cns diseases such as Sturge-Weber. Our joy turned to worry and I was up for about 30 hours trying to understand the meaning of all of this....

That said, our little guy had an MRI performed 2 days after he was born to see if their were any traces of SWS or any other abnormalities. To our relief, the neurologist that reviewed the MRI stated that everything was perfectly normal. (As you can all relate n some way or another, watching an IV put into a vein on his scalp and wheeling him back to radiology wasn't too much fun). Despite the great MRI results, I am trying to determine if there is any chance that SWS can show up if it wasn't seen on an MRI that was done 2 days following birth. I have read that PWS is a 'birthmark' and thus there won't be additional markings that will develop later on. That said, is there any evidence that this applies to the internal abnormality that leads to Sturge Weber??????????? I'm sure he will be fine and live a long and happy life, but I am just trying to be prepared for anything.

Also, I want to thank all of you for sharing your stories, it will certainly help my wife and me as we teach our son to understand and be proud of his unique outward appearance.

05-02-2010 08:06 AM

Congratulations on your new born baby! My son is 18 months and he was born with a port wine stain or Klippel-Trenaunay Syndrome. He has the birth mark on his left arm, shoulder and back and part of his neck. Since he was 2 months old his been getting the laser treatment every-other month. We have seen the difference, the birth mark is much lighter. This doctor is one of the best, you can visit his web-site and even call him. He will help answer your questions.

missy 05-02-2010 12:47 PM

Since his birthmark does involve his eye, he will need to be checked regularly for glaucoma. Otherwise I wouldn't worry until it's time to worry. You've done everything possible to prepare yourselves.

Congratulations on your new baby!! Remember to enjoy him now!


NMG 05-04-2010 06:09 PM

Thanks so much for your comments. We have an appointment to check his eye out this week....IS one week old too early to check on glaucoma????

Also, has anyone ever dealt with Dr. Poole in New Orleans for laser treatment? We are meeting with him in a few weeks and want to see if anyone knows him.


missy 05-04-2010 11:56 PM

See this:

I don't know when the appropriate time to check for glaucoma is. Other parents will chime in, though.


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