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Trusted External Resources
- Medline Plus: Cystic Hygroma
- Medline Plus: Hemangioma
- Medline Plus: Port Wine Stain
- Vascular Disease Foundation: Congenital Vascular Malformation
- Angioma Alliance
- CLOVES Syndrome Foundation
- Liam’s Land for Lymphatic Malformation Research
- Lymphangiomatosis & Gorham's Disease Alliance
- The Hemangioma Treatment Foundation
- The Klippel-Trenaunay Support Group
Hemangiomas: Suzanne's Story
The first one appeared when Anna was just a few days old. I thought it was a diaper rash at first. As a first-time mom, I didn't know one red spot from another.
After another day or two, several more flat red spots appeared in and around Anna's diaper area. I had never heard the word before the doctor told me they were hemangiomas, and the word flew right over my head. I caught the "oma" ending — which sounded to me like cancer, like melanoma — which immediately had me worried.
Now, nearly 3 years later, I know that I didn't need to be alarmed. Hemangiomas (a type of birthmark) are improper formations of blood vessels, and wouldn't pose any threat to Anna's health. The neonatologist told us then that we could expect them to grow larger and redder, but they would most likely disappear by the time Anna went to kindergarten.
After discussing Anna's hemangiomas with friends and family, we found out that we were hardly alone — many others had had them as kids or knew someone who did. Apparently they are pretty common, occurring in approximately 1 out of every 100 births, and there's a higher risk among babies like Anna, who are Caucasian, female, and born prematurely.
In the Hospital
Anna's birth was a big surprise for us. She arrived 7 weeks before her due date. Her health was good from the start, but she spent 2 weeks maturing in the hospital NICU before going home.
There was some concern that Anna's diapers would rub against the hemangiomas, breaking the skin and leading to bleeding or infection. But because none were near any vital organs, there was a pretty low risk for any more serious complications. So the doctors weren't recommending plastic surgery or any other treatment. We were relieved that no drastic measures were needed — the thought of any sort of surgery on my newborn was truly frightening.
By the time Anna was released from the NICU, she had nine confirmed hemangiomas. The tiniest one was the size of a pinprick on her back; the largest one just about encompassed the top of her entire right big toe. They looked like huge blood blisters, and it was hard to imagine that they weren't causing Anna any pain. But she never winced when they were touched and or showed any signs of distress. The doctors assured us that they would not be painful as long as the skin stayed intact.
We had been referred to a pediatric dermatologist to follow Anna for any potential complications. He explained that hemangiomas usually grow rapidly for about 12 months, grow with the child for another year, and then recede over the next 5 to 10 years. In addition, my mother-in-law went to the library and did some research that helped us get a better understanding of what to expect.
The dermatologist ordered an ultrasound of Anna's head and abdomen to make sure there were no internal hemangiomas. While I found this test painless and fun when I was pregnant, for 4-month-old Anna it was pure torture. It seemed there was nothing I could do to comfort her during the 20-minute procedure. She was scared of the dark room, the slimy gel, and the strangers touching her. However, the test produced good news: no internal hemangiomas.
The dermatologist also did more blood tests to rule out thyroid problems. Again, this is a pretty simple procedure, but it was pure torture for Anna. Her veins are difficult to locate, so the nurse had to do a heel stick to draw the blood, which takes longer and is a bit more painful. Thankfully, this round of tests also showed nothing unusual.
By the time Anna was 6 months old, her hemangiomas started to get better rather than worse, a very good sign for a baby so young! Because no serious complications had developed, our main concern was that the skin over the hemangiomas would break, leading to bleeding or infection. We were advised to use Aquaphor (a moisturizing cream) to prevent that.
Like many parents, I thought Anna was the most beautiful child I had ever seen and I believed that's what other people would see too, not her hemangiomas. That said, I only wanted admiration for my daughter and not undue pity. So I made sure she had socks on, even in the summer, just to provide a little privacy. I knew I couldn't do anything for the hemangioma above her ear — which looked like a big red pencil eraser — that wouldn't make it look like we were hiding something, so I did nothing. Beyond trying to photograph her "good side," we just went with it. Thankfully, no one stared impolitely or was rude to us, but if I was speaking to someone and I thought they were curious, I would break the ice and explain what hemangiomas are, because I knew that just a few months before I too had known nothing about them.
A Fading Issue
Anna is now a curious and precocious 2½-year-old and, very happily, her hemangiomas have not caused any problems. The biggest hemangioma — the one on her big toe — went away around her first birthday. The skin texture is slightly different from the rest of her skin, but only her mother or a trained eye would ever know it was there. A few months later, the one above her ear began to flatten and fade.
Now just six of the hemangiomas remain, and their original red appearance has started to fade.
So we feel pretty lucky. Anna didn't have to go through any surgery or treatment, and none were internal or near her eyes, nose, or mouth, or anything else that might interfere with her normal functioning. None of the remaining growths are visible when she's dressed, so we don't need to worry about teasing Anna might face as she gets older.
So now she's free to follow toddler pursuits, like running, jumping, and taking on the playground swings!/p>
Reviewed by: Steven Dowshen, MD
Date reviewed: August 11, 2016