Any Moms Dealing with Infant Hemangioma?

D.,
I'm so sorry to hear that you and your daughter are dealing with a hemangioma. I can say that my second son has one, though I've not had to deal with your experience at all as it is not located on his face. From speaking with our pediatrician, it is most common for it to be located on the face so we've felt very lucky. With that said I certainly can't say that I know how you feel.

From our pediatrician we were told that most of the time, if growing, the hemangioma may continue to grow and change color until about 9 months of age. At that point they will begin to shrink and fade, though this part of the process can take much longer (sometimes a few years).

With that said, and hopes that you find luck for your daughter, My son's did begin to change for the better sometime shortly after 9 months. The first thing we've noticed is that it has started to lighten in color. The Dr. is right though, it is very slow, but we are happy to see it lighten.

Good luck.

So funny- for a second I thought I had written this :)
My 9 month old also has a hemangioma, but hers is on the side of her head, above her ear. It showed up when she was a few weeks old, and the pediatrician said it would probably grow within the first year, then begin to change color and probably disappear by the time she's 2-3. Well, we've been fortunate that hers hasn't grown much, or if it has it's grown at the same rate as her head so appears about the same. Her hair is growing in a little so it's less noticeable, but it still doesn't really cover it.

As far as comments from strangers, mine have mostly been about how their sister, cousin, etc. had one, or more encouraging, how they had one themselves that is gone now! If people stare it's just that they don't know what it is and they're curious. It may be annoying to have that be the first thing people see, but I'd just get the explanation out of the way quickly and move on to how she has Daddy's chin, Mommy's smile, whatever. I'm sure she's a beautiful little girl!

As I understand it, if the infant is born with it then it will go away on it's own. My son was born with one on the back of his head so thankfully his hair hides it. He's now 7 1/2 and only because i know where it is I can still see a little of it. My doctor told me it would go away by the time he was 4 or 5. However, if it is something that showed up after birth then I really don't know what to tell you expcet to ask your pediatrican about it. I hope this helps. Sory I don't have any more info than that.

Hi there,

Just wanted to say I had one when I was born -- quite large, and right on my upper lip. I think my Mom was always dealing with the "what HAPPENED?!" question!
Basically, our pediatrician said to leave it alone, not to try any of the surgical options available because it could make matters worse, and time would take care of things -- he joked I just needed a lot of kisses :)
Mine pretty much disappeared by the time I was 4 or 5, and my lips look perfectly normal.
I also have a friend whose little daughter had a giant hemangioma on her head just below what would become her hairline, and I see no evidence of it in pictures now!

Hello,

My now 3 year old daughter was born with a hemangioma on the side of her neck, not nearly so prominant location as your daughter, but still noticeable. It was about the size of a dollar coin. Now, it's completely gone and my memory is vague now, but I believe was very close to gone before she was 2 years old, maybe even sooner than that...I'd have to go back and look at pictures.

Be sure you have discussed the hemangioma with your pediatrition if you have concerns about it going away. And don't wait to go and have her seen by a dermatologist if you have concerns after that. Not all of these go away and for your peace of mind you should be sure you have all the information you need.

Hope that helps.

Hang in there D.! My daughter was born with one on the whole side of her hand. She too was stared at. I think people are just curious, however answering the same questions again and again was hurtful. The doctors told us that she should "outgrow" it buy the time she was five to right years old. If not they promised they could remove it with surgery. She is now six years old and I have to look hard to find it! With your daughters being in a more visual spot they may be willing to remove it sooner. I never looked into the risks of removing it, be sure to research that first. Overall keep in mind that God has given you a great gift. She is happy and healthy with a fantastic Mom who loves her deeply! Blessings & Best Wishes!

my 18 month old got this after she was a month old- and it is very noticeable and it is on her forehead as well,
I cannot tell you the amount of times that i get asked "oh, how did she get that bruise" or "oh, you took quite a fall didn't you" and bad looks like i am neglectful.

It made/makes me crazy. Even doctors she sees over and over have asked me about it and i have to remind them about her having it. I even started taking photos of it because i get asked THAT much about her "bruise" and do not want anyone thinking anything.

i was told it would go away by the time she was 18 months. It hAS faded a little, not the dark purple color it was- but i hate it too. I took LOTS of photos with hats, and even started putting light concealer on it, not because I MINDED her having it, but i got sick of people not seeing HER, just the mark.

Her bangs grew and cover it now, but it is a pain. I feel for you, and her. My first daughter did not have it.
they say they usually disappear by age 3-5 and i hope so, but it is a non issue now that she has bangs.

I would think of avoiding the surgery- only because there are so many risks with anesthesia, infection in hospitals, etc. Time will make it fade. You have to kind of go into situations knowing u will be asked- but surgery only helps YOU, not her- if you know what I mean. For little ones, I try to opt OUT of surgery- having had to do a different surgery on the little one (with the hemangioma) that was totally necessary- was still VERY hard on us and on her. Time will fade it, safely.
Good luck,. I know it is frustrating, but feel free to email me privately, i can share some photos with you to show you how it faded over the 18 months.

Hi D.!

My 4th daughter was actually born with one on her back about the size of a quarter as well...It slowly faded over time and she is now 5 years of age and it's barely visible at all...I think people staring is more out of curiosity than anything else or even out of feeling badly that maybe she rolled over and bumped her little head on the side of the crib...truly...just politely answer the stare with a gleeful "the good Lord gave her such an extra big kiss before she left heaven to be with us that we are able to see it..and THAT is how we know she is heaven-sent for sure!" Over time, if she sees your reaction to it as a positive one, then her reaction to it and to people's inquiries will mirror yours! :-)

When I was 10 my little sister was born with hemangioma all over the left side of her face, ear, neck, chin and lip. What we didn't know was that it was also in her trachea. We almost lost her and she ended up with a tracheotomy and was in Stanford University Hospital, Walter Reed Hospital and Bethesda for the first 3 years of her life. I would get so angry when people stared. She eventually had laser surgery, her tracheotomy removed and reconstructive surgery on her lower lip. Today she is a beautiful (always has been beautiful) twenty something, happily married with her own business. I would recommend accepting the fact that people are curious and compasionate. Come up with a short explaination that you can rattle off without having to go into too much detail. Love your little peanut and don't be too stressed. :o).K. C

My son had/has one on the spot where your neck and shoulder meet- right where shoulder straps would have sat in car seats so we had it treated. He had about 5 candella laser treatments- It is still there but it is not raised and is grey/silver in color. Due to its location we would have had difficulty with it bleeding and becoming sore as it got larger. Rosenblum from CHKD did his procedures and did an excellent job- he knows a lot about hemangiomas and their progression- maybe you could contact him for an opinion.

I dont have a child with infant hemangioma, but my cousing does. When her little girl was born it was very noticable, but now at 18 mos, it is hardly noticable, and she is the most beautiful, bright little girl. I am sure it will start to regress soon.

My sister was diagnosed with a hemangioma on her face 19 years ago. I covered her face like a beard. My parents were told that it would disappear on its own but my father wouldn't hear that. He sought out a doctor in Phili who gave her laser treatments. Most of the mark disappeared. She had many treatments over the next few years. The hemangioma even grew in her airway and she needed a trach until she was 3. Today you can still notice the hemangioma and she plans on having more treatments to smooth her skin. With your daughter, is the hemangioma raised? I know that the doctors warned that without treatment there was a chance that it would grow outward. Which is why my father insisted on treatment when she was days old. I hope this helps. If you have any other questions.....

Hi, D. - I can tell you that you are not alone. My neighbor's daughter has one on the bulb of her nose! She is cute as a button, though! I'm sure they can relate to what you are experiencing. People can be very cruel and inconsiderate. I hope you'll get responses from others dealing with this, and that you can draw some comfort. Best of luck to you and your beautiful baby girl! N.

While I didn't have a hemangioma- I have a starwberry birthmark that covers my left arm from top to bottm. In my 25 years of working with young children I have had several children that had them to varying degrees. As far as the startes, the best approach is the direct approach- when you see someone staring I would simply say "Oh would you like me to tell you about her hemangioma?" Then simply give them a description. Most people don't know they are staring but appreciate an honest explanation. When she gets to be a toddler, get her into a play group or quality childcare setting because at that age children are curious but not cruel and she willdevelop friendships that will last beyond her physical characteristics.

If your looking for medical assistance the best place is still in Arkansas. I'm not sure whether it is the children's hopsital there of the University hospital but if you google it you'll figure it out. Whichever one it is...they are the best!!

Good luck
A.

My son has one on his arm. He's almost 8 months old now and it hasn't grown in quite some time. I know the pediatrician said that they generally start shrinking after the 1st bday and if by the age of 3 its still visible we can choose to have it lasorred off.

Although neither of my children have a hemangioma, my niece was born with one roughly on the crown of her head. Before she had a lot of hair, there was lots of explaining to do (I remember being in a store with her and another little girl stared at it and then asked about it). Once her hair started growing in, my sister kept just doing her hair in ways that would hide it pretty well (although it stuck up quite a bit for a while). Admittedly, the forehead is a trickier place to disguise it.

My niece is now 5 and it's completely flat (has been for quite a while now, although I can't remember specifically when). I think I remember the doctors telling them that it would slowly flatten and is usually gone or much less noticeable by school age.

Hope you find some answers. Enjoy your new beautiful baby girl!
B.

Hi D.! My best friend's little girl was born with an "angel kiss" on her forehead and her chin. The forehead one was about a quarter size and raised (and got a little bigger as she grew) and the one on her chin was like a tenny tiny dot that almost looked like a scratch. Anyhow, by her first birthday her hair had grown and also her forehead skin moved back as her head grew making the hemangioma rest behind her hairline. So, it's now almost completely non visible. They had her checked out and the doctors said it didn't need to be removed. Best of luck with your beautiful baby!

My neice was born with a hemangioma between her nose and upper lip. It continued to grow (as expected) however hers never went down "on it's own" (as expected). They had different procedures done to help reduce it's size/growth but nothing ever worked. This summer (she's 6 now) she had it removed by a specialist in NYC. Two things to consider ... first be your own advocate and read up on the subject ... the procedures that were done on my niece were not appropriate for her hemangioma development (talking to a specalist, not a dermatologist, it seemed that the drs were always about 6mo late with the application of known procedures). Second, most insurance co. will cover some component of the surgery (if it has to be removed) up until the 3rd birthday ... after that it is considered cosmetic.

Hi D.. I don't have personal experience in this but I do have two good friends that have dealt with this same issue. In one situation the little boy developed the hemangioma after he turned a year old (which, from what I'm told, is a little unusual at his age) but it healed up on its' own in about 4 or 5 months. My other girlfriend's daughter developed the hemangioma shortly after she was born (pretty large and on her lower lip) and at two years old it's starting to shrink and fade in color. At 3.5 months old your daughter has no clue that she looks different. If people stare they are just plain rude or they may be curious as to what it is. My friend with the daughter sent me this book: Buddy Booby's Birthmark (http://www.buddyboobysbirthmark.com/). It's a great book and part of the proceeds get donated to the Vascular Birthmarks Foundation. Sorry you have to deal with this but just know that, even though it may take a little while, these things tend to heal themselves. Have you seen a specialist who can give you a better idea of what you're facing in terms of healing time and treatment options? Best of luck and congrats on your new baby girl!

My daughter Julie (now 15) was born with a tiny speck on her cheek. The nurses called it a stork bite. Within weeks it started growing and even pulling at her eye a little. It was always the first thing people saw. I even had a lady at Wal-mart one day ask me if I had hit her! I took her to a specialist and he said it would be gone by the time she started school. She started high school this year and it is still there faintly but almost unseen. The last time I was even asked about it was when she was seven at a wedding. She also had one on her back that disappeared completely byt the time she was two.
Julie was my first baby after three miscarriages. As hard as it is today for you, know that she is your beautiful little girl and it will get better!
Good luck with this. I know it can be difficult.