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.

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
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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
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