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Hemangioma
#1

Just wanted to say hi and introduce ourselves! I have a 8 mos old daughter, Jillian, who has a hemangioma on the right side of her face - although not huge (its in my pictures), its still unsightly and gets similar stares as others. Luckily she’s a happy, lovely baby :slight_smile:

We have seen a few specialists and are considering surgery. Some drs we see say ‘Wait it out’, they do NOT recommend surgery, saying it will go down on its own (idea being why give her a surgery scar for no reason, etc). However, our dermatologist, and the hemangioma specilists we saw (Waner/Levitin) in NYC say there will still be scarring/extra skin/leftover marks once it does go down on its ownanyway. Which could be when she’s 2, or 5, who knows? And the surgery scar should heal well, being that she is so young.

We made an appt for surgery the middle of Sept w/ Dr Waner. We liked him and esp. Dr Levitin a lot and know they would probably do a great job. Does anyone have any advice for undergoing this?

Hubby is reserved about putting Jillian through surgery if it will go down/look better on its own, but I’m leaning towards the ‘why wait and put her through the social/physical agony, just do it now’ train of thought. The hemangioma is the kind with both the raised red mark, and the swelling/bruising underneath.

Well, thanks for listening! I hope you are all doing well with your special babies!
-Marie

#2

My husband and I are in just about the same exact situation you that you and your family are in. My daughter Olivia is 7 months old and has a small hemagioma on the side of her nose that is not obtrusive in anyway, but is very noticeable. We have been seeing Dr. Blei in NYC and at this point she said it is out of the growth phase and if we’d like to get a consultation from Dr. Waner about our surgery options we should go ahead and do that. So now we are dealing with the idea of surgery verses the wait and see approach where Olivia may end up with left over skin, scarring and etc. from the involution and need corrective surgery anyway. My husband is much like your husband in the sense that he is ambivalent about putting Olivia under for surgery and so we are trying to deal with that also. It is a relief to know that someone else is in just about the same situation as we are. So please update us about your situation if you can. It brings a certain level of comfort and helps give us a different perspective on things. Much luck to you, your family and most of all your daughter.

#3

Oliviasmom - I know its a hard call! But i’m leaning towards going through with the surgery, simply for Jillian’s and our own peace of mind. I’d hate for her to get teased for it, when I could have handled it now and forgone all that. One dr we saw (plastic surgeon on LI, close to where we live, a second opinion referral), said 'oh perhaps it bothers the parents more than the baby, eh?". Which kind of annoyed me, because of course it will. duh.

They had one caveat that there is a nerve under her hemangioma that is what you use to raise your eyebrow, and there is a risk it could be damaged, but Dr Waner said its a very small risk and he’s done many surgeries and had no issues.

Definitely make the appt - it takes a while to get in there - and see for yourself. The more I think/talk about it, the more I want to keep our surgery appt… I’d love to hear your thoughts as well after you see the drs.

Thanks for your kind words and well wishes!!

#4

I totally agree with you on the idea of taking care of it now rather then later. I don’t want Olivia to have to deal with any undue stress, social and or emotional implications with this when she becomes self aware. And we definitely want this to be taken care of this for her well before she goes to school.

That doctor that said it bothers us the parents more then then the children was right, but this is only b/c we as parents want to protect our precious babies from the harsh cold reality that people WILL treat our children differently. We have heard this a couple of times ourselves and it never makes us feel any better. Doctors (especially surgeons and specialists that deal with hemangiomas) need to be more sensitive to our situations no matter how small or big it may seem to them. But anyway, I m going to schedule a consultation as soon as I can for Olivia and I will keep you posted to things as I hope you will too. Thanks again for sharing!

#5

When we have discussed surgery with our doctor, one thing that he mentions is that the surgery doesn’t always work…scar tissue can form or the hemangioma can come back. But, I’m not sure how often that happens. Luckily we haven’t had to deal with that option yet

#6

Well, we have an appt. on August 7th with Dr. Waner about our surgery options and if any are right for our situation. I will be sure to ask him about the statistics on the success rate with surgery and how often hemangiomas come back, etc. so that we can make the best decision for Olivia. I know every case is different and there are no guarentees with hemangioma treatments, but hopefully we will make the right decision for our baby and all of this experience will just be a memory sooner rather then later.

#7

Hello, In a response to CarolG’s reply about “a possibilty” of scar tissue forming where the Hemangioma was after laser surgery, that is correct. We were told that might happen where my son received his laser treatments on his, and in fact it turned out that way. I’m not sure if it was due to where it had opened up and started bleeding or was it the laser. But, where his hemangioma is (now pretty much faded into a lighter skin color shade, it is very puffy, prune like texture.) But, I am deff. glad we did the laser treatments.

#8

Well, my husband and I took our daughter Olivia to see Dr. Waner in NYC. For those of you who don’t know who he is, he is a Pediatric Surgeon who handles almost of the hemangioma surgeries in the NY, NJ and surrounding areas. He is well known and has done some really amazing things for a lot of babies and young children with hemagiomas. We went for a consultation and he suggested that we get Olivia’s hemangioma which is on the side of her nose removed within the next 2-3 months before she turns one, b/c if we didn’t her nose would not be symmetrical and we run the risk of having to do more then one surgery. He said that the procdure would be done on an outpatent basis and take about one hour. He said there would be minimal scarring and her nose would be symmetrical. Of course some of you are thinking just wait and see, but in our case even if we did wait and see the skin would be sagging there and her nose would not go back to normal and we’d have to get Olivia corrective surgery anyway. So instead of putting Olivia through any necessary pain and have her deal with any social & emotional implications due to the hemangioma we are opting to have it removed sooner rather then later. Of course we are still nervous, but we have been doing a lot of research and seeing a number of specialists and we feel that this is the best decision for Oliva. We just want this to be as one of the other members on this forum has said “a distant memory”. We just want Olivia to lead a happy, healthy and normal life.

#9

Hugs to Olivia, my prayers and thoughts will be with you all.
Keep us posted on how it goes

-------------- Original message --------------
From: OliviasMom hemangioma-cpt5230@lists.careplace.com

#10

Thank you for your kind words and thoughts. It is really nice to have support from people who know what we are going through.

#11

Oliviasmom - all the best!! Hugs to you two - we are doing Jillian’s surgery on Sept 12th. It can’t come fast enough in my opinion - we’re tired of explaining it to new people she meets :slight_smile: It also has started flaking a bit, which we just put some bacitracin on and its fine. Although you can tell it starts to bother her. When she nurses, she touches it and she definitely prefers to nurse on the side it’s NOT on - so I’m sure her laying on it when I hold her bothers her to some degree since its there on the side of her head…

Please keep us posted as to her progress!

#12

I totally understand the wanting the suregry date to get here already. We are so tired of waiting and waiting anymore. But I know it will be here before we know it and this hard time will be behind us. I hope everything goes super smoothly for Jillian on Sept. 12th. It sounds like she has just been through way too much already. I will keep sending positive light and thoughts her way and pray for her daily. I hope you will keep us posted on her progress as well. God Bless and stay strong!

#13

My daughter is 3 years old, she was born with a hermangioma on the right side of her face, It has almost all gone away now,but it left lots of scared tissue and some dots of red, and it ate the bottom of her earlope off, right were you would put a ear ring. She is going to see plastic surgery team is September and we are very nervous about the idea. We have no idea what they will tell us, or how she will respond. I can tell you that if they had told me that at 4 or 7 months old they could take this away with surgery I would have jumped at it. That is knowing what I know now. I know that she went through lots of pain, and to her tourture getting injections once a week. And at months old they don’t know what is going on, at 3 years old she is sooo scared. I hate having to put her through that, but I know that she will thank me when she is older.