Jane's Story

Jane was born with a raspberry birthmark on her right butt cheek. It started at the anus and covered about half of her bottom. The doctors at our local hospital said that it was nothing to worry about and, with time, it would gradually fade away. We didn't know what a hemangioma was and were so busy being first-time parents that we didn't give it a second thought.

After six weeks, small sores started wearing away within the hemangioma. Each morning it looked more red and raw as the hemangioma ulcerated and the flesh disappeared. We went to our pediatrician three times in two weeks. The advice was horrible, and our first lesson as new parents was to trust your instincts. The pediatrician we were seeing (no longer our primary doctor) obviously did not know what we were dealing with. The instructions she gave us inflicted more pain and discomfort, and our days were filled with worry and crying – from all of us. No matter what we tried, it got worse.

One Sunday morning, a new sore appeared, and by noon, a few small sores gave way to one big area of open flesh. I spent the whole night on the internet trying to learn everything I could, and I became even more scared. I learned that hemangiomas aren't uncommon, but those in the diaper area are prone to ulcerate and the risk of infection is high. I didn't know how to clean her bottom. What was making it get worse? Was I doing something wrong? Then I came to this website and read about the Birthmarks and Vascular Anomalies Center at Children's Wisconsin in Milwaukee. I decided that we needed better medical care and advice. We left the next morning for an appointment.

Information – good information, based on experience and knowledge – is very powerful. The more we learned, the less we were afraid. There is some bad information out there, so finding someone you trust is important. We were disappointed to hear there was no immediate cure and that it really isn't known why some kids are born with hemangiomas. We were also discouraged to hear that the ulcer was going to get worse, but we also began to understand what we were in for.

The doctors and nurses at Children's taught us about pain management. They said that there were some treatments we could consider, but that the hemangioma was likely to run its course and relieving Jane's pain was our main task. Over the next two months, the ulcer did get worse, but we managed through it. We took pictures to keep track of the changes, made a medicine log to track frequency and amounts of painkillers, and went through a number of creative ideas to keep feces, the leading cause of infection, off of the sore.

As things continued to worsen, Jane went through two laser treatments at the clinic, began steroids, and used a synthetic platelet-building cream. These months seemed so long. Riding in a car seat was painful for Jane, and when she urinated or pooped, the numbing cream would wash away and she would cry. Many grocery trips ended two miles down the road, and I would turn around and go back home.

Our days were filled with cuddling, singing, reading, and dancing. We comforted each other. Caring for a baby, especially a sick one, is demanding. I started taking 10-minute walks when Dad got home from work. It was a good opportunity for them to bond and for me to have some alone time. Go exercise, spend time on a hobby, do something that makes you feel normal even for a few minutes and you'll be revived and ready for another two hours of singing nursery rhymes.

By the third month the ulcer showed signs of healing. We had elaborate diaper-changing processes and went through tubs of Triple Paste. We adapted and modified the techniques as the hemangioma changed over the next four months. After six months, most of the sores were closed. The new skin was very delicate and prone to bleeding, so we continued all of her diapering and bathing with caution.

At 18 months, Jane's scar looked like a shark bite, but as her bottom grows it is less noticeable (we're hoping it will keep her modest so she'll never want to wear a thong at the beach). The scar tissue is puckered and remains delicate. A small area of the hemangioma remains reddish, but has been gradually fading. Every so often it will start to bleed, and we'll get out the antibiotic and paste and pray for it to heal quickly, and it does. She's very good about going on the potty, which keeps her bottom clean and avoids lots of wiping.

I know one day she is going to ask me why she has that scar, and I'll be so relieved because she'll have no memory of the pain, worry or sadness we felt when things were bad. I'll also be relieved to remember that we did all we could to comfort and love her, because that's what a parent does.