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Old 04-06-2011, 07:25 PM
lovemj2001 lovemj2001 is offline
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Join Date: Apr 2011
Posts: 2
Default unborn newly diagnosed

I am 32 weeks pregnant & I have just been told that my baby has a congenital hemangioma on his forehead slighty off to the side which is measuring about 4-5 cm (I think - at first they said inches but they also said its converted because on the ultrasounds it looks HUGE & its growing with my baby). I've done ultrasounds, MRI, & the echo heart test & the dr's aren't really worried about it but I'm very scared. I have contacted one of the doctors on here by email & just waiting for a response I am going to love my son regardless but I want to make sure I am knowledgeable about his condition. We are going to be seeing a specialist once a week, have a c section (probably at 39 weeks provided his heart isn't strained due to the increased blood flow ) & meet with general surgery & neonatalogists. All of this frightens me. Based on my own research hemangioma aren't discovered until weeks after their baby's birth and they are very small at first so I am confused as to why my baby has one so large so early...any info/advice/suggestions would be great. Family, dr's, & friends just want me to relax & try not to think about it but that's easier said than done
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Old 04-06-2011, 08:28 PM
abatie abatie is offline
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Join Date: Oct 2009
Posts: 240

First - take a deep breath!!! I have been down the medical roller coaster trip this past two years and I know that you have to take all of the information thrown at you in stride. Sometimes I was so overwhelmed at what doctors were telling me that I didn't even want to get out of bed the next morning to deal with it. But now I look at all we have been through and think I could probably take on the world! I do have to say that first off I have no experience with hemangiomas but I do have a child with CMTC. If you aren't familiar check it out on this website (I would guess you haven't even heard of it because most of my daughter's doctors haven't). It sounds like you are taking every precaution and doing all of the best preparation that you can. I wouldn't say "don't think about it" because that is impossible. I would say that you don't want it to consume your life. I have time periods of my daughter's life that I don't remember except for which doctor or specialist that we were seeing at the time. I regret that! I missed some of the special times I had planned (since she is my last) because doctor appointments consumed us! Enjoy your son first and deal with all of the medical as it comes. Don't let yourself worry now because you can't change anything. The more stress you have the more your son has. The best thing you can do for him now is learn all you can about his condition and be the best "incubator" possible. Best wishes and welcome to this very unique family that you never expected to be part of!!!
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Old 04-09-2011, 01:17 AM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054

Please keep in contact with us here. The support was very important for me as I went thru this with my son. Yes, hemangiomas are typically discovered a few days or weeks after birth. You are likely dealing with a NICH or RICH. I would highly recommend keeping in contact with the specialists on the VBF website to make sure you are getting the right information from local doctors. It really helped me to confirm my son's treatment with leading experts.... (all was correct with our local care... just helpful to confirm you are getting accurate info). It will be ok. Good luck with delivery and we will be anxious to hear your updates. Feel free to email me anytime.
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
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Old 04-09-2011, 04:23 AM
smurph smurph is offline
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Join Date: Jan 2007
Posts: 458

Hi there! I was just going to say what Corinne had said about NICH or RICH which is different from the kind of hemangioma my daughter has which was not present at birth. It seems like they are aware of it and monitoring everything which is good. I also agree it's best to see a specialist who deals with those types of hemangiomas on a regular basis. This website is awesome and I"m sure all the doctors and families will be helpful to you! They have been a lifesaver for me! Keep us posted!
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