Strawberry Hemangioma

Are you part of the NICU club? Do you have a child who is still struggling with the effects of being born too soon from preeclampsia? Share your concerns and stories here among parents who have been there.
patricks mommy
Registered User
Posts: 244
Joined: Mon Aug 02, 2004 12:54 am

Re : Strawberry Hemangioma

Postby patricks mommy » Fri Oct 01, 2004 05:18 am

My son Patrick has three hemangiomas. He has a small one, about half the size of a pea on his forehead, one that got fairly large on his left nostril and a cavernous one on his left outer thigh that is probably two inches in diameter. When he was a few months old they scoped him to look at his throat and vocal cords because they thought he had one down there. They wanted to knock him out and look even further down, but my husband and I decided against it. We talked to them about what the treatment would be if they found one and they said they would just monitor it. He wasn't having breathing problems, just a noisy breather so we waited.

He ended up having a few laser treatments on his nose to prevent further growth, but not to take it away. The one on his nose is now getting pretty flat and the color is now more light pink than red or gray. The one on his leg is getting better but it is much bigger and cavernous so that will probably take years.

When the hemangiomas started showing up he was still in the NICU and when we took him for his first drs appt after his release, the dr said that the theory is to just leave them alone and they will go away later. I wish I had pushed him for a referral because 8 months later when we finally saw the derm. he said that was incorrect. They would have been able to treat them when they were just forming and when they were still flat. Live and learn I guess. Having PE and a preemie has taught me to do my own research and really question and push drs when I disagree. You learn that you have to be your own advocate and your childs.

Bethany (29)
Brian (30)
Patrick born 06/12/01 at 31 wks due to PE weighing 3lbs 4oz

lyndsie
Registered User
Posts: 89
Joined: Wed May 26, 2004 01:30 pm

Re : Strawberry Hemangioma

Postby lyndsie » Wed Sep 29, 2004 10:38 am

Hi there,

My daughter wasn't a preemie (born at exactly 38 weeks), but she has a very large hemangioma on her bottom. At first we thought it was a birthmark until around 4 weeks when it started ulcerating. It was absolutely horrible to see her in so much pain from the ulcerations. Every time she would pee or poop she would scream in pain. We did weeks and weeks of special dressing and creams, but the only thing that really helped clear it up was laser surgery. Has anyone mentioned that to you? It helped considerably although it still took a few weeks for it to heal. It was tough to put her through it (I cried more than she did!), but in the end I really think it hastened her recovery. We were able to do it on an outpatient basis and only had to have it done once. There is a chance that it could ulcerate again if it keeps growing, so they are keeping tabs on it.

Hang in there! It is SO hard, but she will be okay!

Lyndsie
Mom to Liv Abby, 5/5/04, pre-e

samarasmom
Registered User
Posts: 560
Joined: Fri Apr 09, 2004 09:37 am

Re : Strawberry Hemangioma

Postby samarasmom » Tue Sep 28, 2004 09:10 am

There are other options such as steriods that i recall you saying she was on to reduce. Hemangiomas actually are avoided being removed unless they are causing some type of obstruction or problem.Will be looking for an update on the seventh for what the plan is for this. I can understand the frustration of it all and wanting it all to just go away. I am here for you on this. Email me or vent on here what you feel. Keeping you and Grace in my prayers

Sandra 23
Michael Abron ( fiance)
Elijah Kristopher Michael Abron ( 43 wks no complications) 5/6/99
Isaiah Liam Abron ( 37 wks PE and Preterm labor) 3/25/02
Samara Juliyana Abron ( 35 wks PIH and poss PE ) 7/21/04

User avatar
catherine
Forum Moderator
Posts: 2832
Joined: Fri Jan 31, 2003 05:53 pm

Re : Strawberry Hemangioma

Postby catherine » Tue Sep 28, 2004 08:10 am

Hey Wendy, yes I've seen the Discovery program, one of the best things about being in Little Rock is the quality of the doctors that practice at the Arkansas Children's Hospital. I know that they offer a lot of different treatments for hemangioma in the clinic, not just surgical. All my kids go to the faculty pediatricians and needless to say they've always been scrupulous in monitoring birthmarks. Chloe has a strawberry hemangioma on her butt which has yet to fade. She had two little raised hemangiomas when she was born, one on the tip of her tongue which looked very strange.... but they have faded now. I believe that time does help improve things. I know that the tissue involved is believed to be derived from the placenta, hence that awesome capacity for growing blood vessels. Weird fact of the week.

Catherine
Mom to Finn, Lucy (preeclampsia and HELLP) and Chloe.
Moderator HELLP Syndrome Survivors

User avatar
lauchlan
Registered User
Posts: 281
Joined: Thu Jun 24, 2004 12:03 am

Re : Strawberry Hemangioma

Postby lauchlan » Tue Sep 28, 2004 07:50 am

Sorry, It's been a while since I've been around. We've changed Grace's bandage to one made for people with serious burns & found a tape that she's not allergic to. It's doing MUCH MUCH better. Now that it's back to not bleeding, it seems to be causing a lot less pain and I'm able to take a good look at it. It has definitely flattened and is starting to turn gray. Those are both good things. Thank goodness!!!

Her doctor is a pediatric dermotologist who specializes in Hemangioma's. His name is Tor Shwayder and he's fabulous. He thinks a lot of doctors remove them prematurely and that can cause more problems than the Hemangioma itself.

However, I'm ready to be DONE WITH THIS!!! Our next appointment with him is on Oct. 7 and I'm going to have him explain to me again why we aren't taking it off.

I'll let you know what he says. Thanks as always for your support ladies!!!

Proud co-sleeping, baby wearing mom to
Grace - 3/14/04
3 lb. 7 oz. 16 in.
Born at 33 weeks due to PE

wcarder
Registered User
Posts: 934
Joined: Tue Jun 22, 2004 10:38 am

Re : Strawberry Hemangioma

Postby wcarder » Thu Sep 09, 2004 06:24 am

Did any of you catch the special on Discovery Health (my favorite channel....) last night about hemangioma's? I thought it was such a coincidence...I didn't know anything about them, but aparently there is a doctor in Little Rock Arkansas who is THE BEST. They talked about steroid treatment and surgery, etc. They may have more information on there web site or something if you missed it....

Wendy

DD~ Kenzie Celeste, 30 weeks GA, severe PE,

ps~ his name was Dr. Waner.

aimeejane
Registered User
Posts: 589
Joined: Tue Jan 28, 2003 08:45 am

Re : Strawberry Hemangioma

Postby aimeejane » Wed Sep 08, 2004 07:09 pm

My sister had a strawberry on her chin, and as an adult, it's completely faded. (My parents and I can see the remnants of it when we look hard, but no one else can.)

Nicky has a raised hemangioma on his left pinky. It was the size of his whole finger and bright red a few weeks after birth, but thankfully has caused him no problems. It has not grown as he has, and it's faded. It's basically the same size it was back then, but it's the same color as the rest of his finger. The doctor won't do anything about it unless it starts to cause him problems.

So, that's our story, but yours is COMPLETELY different. With the pain and bleeding, I would think it should be taken care of, according to everything I've read/heard. When I asked our pediatric surgeon (who did the hernia surgery) about Nicky's, he said that if it ever had to be removed, a pediatric hand surgeon would do it. What kind of specialist are you seeing for your daughter's? With the symptoms she's having, I'm surprised they're not doing more. If I were in your situation, I would probably ask for a consult with a pediatric surgeon.

Good luck!!!!

Aimee
Georgia State Coordinator
Moderator - Pregnant Again

Ds Nicky - 3/24/00 (28 wks - eclampsia)
Ds Kalen - 7/10/03 (36 weeks - preeclampsia)

laura
Registered User
Posts: 5139
Joined: Tue Jan 28, 2003 12:17 am
Location: Anchorage, AK

Re : Strawberry Hemangioma

Postby laura » Wed Sep 08, 2004 05:53 pm

My niece had (has) one that's about three inches diameter on her side-- they always said that hers not was removable, and at 19 she still has a little red patch, though not as big or raised as it was when she was a child. She was born at 32 weeks from PTL. Good luck with Grace's removal, though!

Laura
Administrator/AK Area Coordinator

Alicia (severe PE) 5/98 ~ Camille (htn, oligo) 4/03
http://www.babiesonline.com/babies/c/camilleandallie/

samarasmom
Registered User
Posts: 560
Joined: Fri Apr 09, 2004 09:37 am

Re : Strawberry Hemangioma

Postby samarasmom » Wed Sep 08, 2004 05:21 pm

Isaiah had a hemangioma on his Butt :) It was removed at 2 wks old when they removed all the other tumors that he had in his body called Myofibromatosis.
It caused him some pain and that was why they operated. HAs your doc suggested surgery and is he aware that its painful and bleeding for your little one. I would let him know and push another form of treatment. Are you aware if they can do surgery. It can be scary but it is better than to have them suffer. Isaiah is 2 yrs old and had 11 tumors removed and the Hemangiona AND Pyloric Stenosis correction. WHEW.
If you have any questions or concerns or need someone to talk to please feel free to email day or noght. I have been there.

Sandra 23
Michael Abron ( fiance)
Elijah Kristopher Michael Abron ( 43 wks no complications) 5/6/99
Isaiah Liam Abron ( 37 wks PE and Preterm labor) 3/25/02
Samara Juliyana Abron ( 35 wks PIH and poss PE ) 7/21/04

bhargavidd
Registered User
Posts: 10
Joined: Wed Jan 07, 2004 09:12 pm

Re : Strawberry Hemangioma

Postby bhargavidd » Wed Sep 08, 2004 11:43 am

my dd has a massive cavernous parotid hemangioma along her left jawline. she was on oral steroids for it, but they didn't work. we found a GREAT specialist in NYC and he performed an intralesional injection of a steroid concoction. it shrunk immmediately! she is going to receive her second injection by her doctor here on friday. check out: groups.msn.com/vascularbirthmark support

good luck!
bhargavi.

Mommy to Karuna Sindhu, born 1 pound 3 ounces at 25w6d.


Return to “Parents of Preemies”

Who is online

Users browsing this forum: No registered users and 2 guests