4 week-old granddaughter with hemangioma near lip - Vascular Birthmarks Foundation Forum
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Old 12-19-2011, 02:43 AM
Sue R Sue R is offline
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Join Date: Dec 2011
Posts: 1
Default 4 week-old granddaughter with hemangioma near lip

Thank you thank you thank you for this site and the Foundation. When my daughter pointed out a small red area near the crease of my granddaughter's mouth, the doctor pronounced it a hemangioma and my heart sunk as I know what they are. She suggested the wait and see approach. Looking at the websites for Childrens Hosp Boston, the Mayo Clinic and Yale Hospital to educate myself, I read that areas near the eye, throat, lips and diaper need early intervention. There is also a larger red area that blanches with pressed on the back of her head, and a lighter pink area on her eyelid which I sure hope is a stork bite!

I called Children's Hosp Boston for information and Kerri was wonderfully helpful. Unfortunately, my granddaughter is currently on the state of CT insurance plan so Boston is out for us. She'll have the millitary insurance soon which will be helpful (I hope!). Kerri had me email pictures which she will have the pediatric dematology nurses review and give me whatever advice they deem useful.

I also emailed the Yale Dept of Pediatric Derm and received an email from its Director, Dr. Antaya. He reviewed her pictures and said she should be seen soon and offered her an appointment this Thursday in their vascular anomalies clinic in New Haven, CT.

My daughter will be calling the pediatrician in the morning to request a referral now rather than wait until there are complications. If she refuses we will have to find another doctor immediately or pay out of pocket for the initial exam. Wish us luck!

Last edited by Sue R : 12-19-2011 at 03:01 AM.
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Old 12-19-2011, 03:07 AM
missy missy is offline
Join Date: Apr 2006
Posts: 1,794

Hi and welcome!

Please let us know how things go with Dr. Antaya on Thursday. Actually, let us know tomorrow if you got the referral. If you find that you need help with insurance issues, ask our insurance expert at http://birthmark.org/experts.php

Good luck! We'll be thinking of you!

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Old 12-19-2011, 03:29 AM
smurph smurph is offline
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Join Date: Jan 2007
Posts: 459

Hi there! My daughter has a lip hemangioma and has been seen at Boston Childrens for the past 6 years. We live in NH and I'm not sure how the insurance works exactly, but at times my daughter was on NH Healthy Kids, which is Medicaid and it was accepted in Boston...maybe because there are no vascular anomalies specialists in NH??? I'm not sure if that's the same thing as CT state insurance. I'm sure they are probably great at Yale, too. I thought I'd mention it just in case there was still a chance/or a need to go to Boston.

I know it can be rather alarming to see a hemangioma growing on or near your granddaughter's lip. I was pretty alarmed myself at the beginning of our whole journey. But it seems like you are on a great track just trying to educate yourself and be proactive in getting the opinion of a specialist. This is very good idea since you are dealing with her lip. You'll be able to have it monitored from an early age and you'll be able to know what your options are in terms of treatment.
Good luck with her appointment and keep us posted! Glad you found this site! It has been a lifesaver for me too.

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