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-   -   3 Month Old with Congenital Hemangioma (http://birthmark.org/board/showthread.php?t=6740)

Hbetuel 03-26-2014 05:27 PM

3 Month Old with Congenital Hemangioma
 
Hello Everyone!

I am new to this site and was hoping for some insight from parents that have had a baby with a congenital hemangioma. My baby boy was born December 23, 2014 with a deep congenital hemangioma on his chin. This hemangioma was not diagnosed in utero but looking back at his 4D ultrasound photos, you can clearly see it. After being seen by a pediatric dermatologist, we heard what most parents hear, "lets just take the wait and see approach". This is both frustrating but understandable because you dont want people to look at your beautiful child and just see his hemangioma but at the same time, you do not want to put him through medication or surgery unless it is absolutely necessary. So basically I am looking for any advice/stories of parents whose child has had a congenital hemangioma. Has the hemangioma gone away on its own or did it require treatment? I have been told that congenital hemangiomas are fully developed at birth and most will start to involute and go away completely by the time the child is a year old. If the congenital hemangioma did require treatment, was it effective and what was involved with the treatment? I have also heard that congenital hemangioma treatment is different because sometimes they do not respond to the treatments they do for infantile hemangiomas. Thanks in advance!

smurph 03-27-2014 03:24 AM

Hi there! There a couple types of of congenital hemangioms, so it would depend on what type you were dealing with. There's RICH (rapidly involuting congenital hemangioma) and NICH (noninvoluting). I would recommend you email Dr. Levitin and send him a photo (go to the Ask the Experts link.) He can give you his opinion based on your son. Good luck!
Shannon

Hbetuel 03-27-2014 02:28 PM

Thanks for the reply Shannon. I will email the expert and ask. Hopefully he can provide me a little more insight about my son's hemangioma.

Jpena 10-07-2014 06:49 PM

hbetuel
 
Hi my son is 4 months old and he was diagnosed with 4 fairly small red hemangiomas on his body and 1 on his right eyelid that has seemed to be a little more noticeable since 2-4 weeks ago. The hematologist suggested starting propranolol and also referred us to an opthamologist in a few weeks. My husband and I decided not to start any medicine until seen by the specislist. I'm scared to start him on medicine with side effects and scared for the hemangiomas to grow. I don't know what to do. What approach did you take hbetuel? Did you hear back from the Doctor you emailed? Any advice or information would be appreciated.

Jpena 10-30-2014 09:10 PM

hbetuel
 
Hi my son is 4 months old and he was diagnosed with 4 fairly small red hemangiomas on his body and 1 on his right eyelid that has seemed to be a little more noticeable since 2-4 weeks ago. The hematologist suggested starting propranolol and also referred us to an opthamologist in a few weeks. My husband and I decided not to start any medicine until seen by the specislist. I'm scared to start him on medicine with side effects and scared for the hemangiomas to grow. I don't know what to do. What approach did you take hbetuel? Did you hear back from the Doctor you emailed? Any advice or information would be appreciated.

smurph 11-02-2014 04:00 AM

Hi there! I know how hard it can be to try to sift through the information and recommendations of the doctors and make a decision on what to do. I have been there myself. I would suggest taking pictures of the hemangiomas on a regular basis, especially the one on the eye. If you feel strongly enough, you might be able to call the opthamologist and see if you can get the appt moved up sooner. I would also check to see how much experience the ophtamologist has with hemangiomas. You can email Dr. Aaron Fay here on the Ask the Experts page. He deals with hemangiomas affecting the eyes. He may be able to give you some guidance as well.
Good luck!
Shannon


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