Advice - 9wk old, upper lip deep hemangioma

mnlawson · #1 03-03-2011, 11:56 AM

Hey Guys!

I am new here, just wanted to see if anyone has advice for me as far as treatment for my 9 week old daughter.

She was born with stork bites on back of neck, and angel kisses on eyelids. These were the only birthmarks visable at birth.

Around 4-5 weeks of age, I notice her upper lip looked somewhat swollen. My ped thought it was just a "sucking pad." Now 4-5 weeks later it has clearly gotten larger and has a bluish, purple tint with a few small red spots at top of lip and up to the nostrils. So this week, the ped mentioned that he thought it was a cavernous (deep) hemangioma. He wants to take the "wait and see" approach and see us again in 4 weeks. I am concerned because of its location. If the growth gets out of control, I can foresee it becoming a problem with sucking/eating and possible depending on size, affecting her ability to breath from her nose. I am also concerned with long term affect on shape of lip, etc.

My question is should I wait 4 whole weeks or try to get second opinion, and hopefully start some steroid and/or laser treatment?

Any advice is appreciated!

Thanks,
Mary B

missy · #2 03-03-2011, 10:26 PM

You probably should try to see a specialist. Where are you located?

And, welcome!

Missy

KatieG · #3 03-04-2011, 12:14 AM

I would say to see a specialist as well. This is a fast growth time around 9 weeks so you could be seeing a lot of change.

smurph · #4 03-04-2011, 02:29 AM

Mary,
I would get an opinion from a specialist before the 4 weeks personally. My daughter has a lip hemangioma and it ulcerated at about 10 weeks of age (that's not to say that your daughters will) but our pediatrician was an advocate of the wait and see approach...he was very resistant to our daughter getting treatment. However, when we went to the specialist we were told that her hemangioma was growing rapidly, had a painful ulceration and needed pretty aggressive treatment. Sometimes it's important to be careful with lips because they don't always go away on their own without any help. By getting treatment early, I believe that my daughter's lip-line was saved and it prevented further complications down the road. So I say, with lips, it's best to just get to the specialist sooner rather than later. I don't see any reason to wait. You may not have to do any treatment at all....but at least you will know your options and you'll be able to have the doctor monitor her hemangioma sooner. Hope that helps! If you want to see any pictures of my daughter's lip hemangioma, email me at hohen13@comcast.net.
Good luck! I will be thinking of you. I know how stressful it can be. We were there 6 years ago (my daughter will be 6 tomorrow) and it seems like just yesterday!
Shannon

mnlawson · #5 03-04-2011, 02:54 PM

I am located in the Winston Salem area of North Carolina, and I have contacted Dr. Levitin, which from information I found on the internet, has recently opened a birthmark center in Greensboro, NC, I also have emails out to a few other specialist including Dr. Waner. I would love to share a picture with you guys, but am unsure hot to include a picture in my post :/ Thanks for all of your advice!

missy · #6 03-04-2011, 10:07 PM

If you send the photo as an attachment to contact@birthmark.org I'll post it for you.

Missy

missy · #7 03-05-2011, 01:08 PM

Here are your pics! What a precious one!

Missy

carley09 · #8 03-08-2011, 03:26 PM

I would see a specialist sooner than later! My daughter has an upper lip hemi as well! We saw a specialist very early on as I had the same concerns you have! VBF is a wonderful resource- we are all soooo lucky to have these great Dr's to help us!

I just don't understand why these pediatricians say "wait and see" Our Dr said the old adage is "hemi babies should be seen by specialist on way home from
hospital! The earlier the better!

Let us know how you make out! Take one step at a time, I know how overwhelming this can be!

Cc

mnlawson · #9 03-11-2011, 01:09 PM

Just wanted to let everyone know that we did get into the plastic surgeon this week, where he suggested to start propranolol immediately (it is beginning to ulcerate), so we were rushed over to the cardiologist at Wake Forest Baptist Hospital, who started her on propranolol that day. I am amazed that already, only the 2nd day of treatment I can tell a difference in size and color. I will keep you guys updated on how it continues to work for her. Thanks for all the advice!

smurph · #10 03-12-2011, 12:41 AM

Hi there! So glad to here everything is going better. I'm glad you were able to get in to the specialist sooner! Especially with it ulcerating! Imagine if you had waited the 4 weeks! Keep us posted! If you want, send me pictures to my email or facebook page!

Shannon