| Emma's Hemangioma |
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| I created this page as a resource to friends and other parents who are curious about, or dealing with their own hemangioma(s). Web resources have been very important to Jan and I as we've dealt with Emma's so I thought the least I could do is share any insights we have or progress we've made. |
| Emma at 16 months, 3 weeks |
| In our case we noticed an irregularly shaped "strawberry" on her right cheek when she was born. Birthmarks and mild discolorations aren't that odd after you've just been born, so we took the hospital's appraisal of it as such and didn't think much more of it. |
| At 3 1/2 weeks, during the course of a weekend, Emma's strawberry grew to a much deeper red and began to spread across her cheek. An ominous bulge appeared at her right temple. Needless to say, we were in a panic. The vascular growth swelled her eyelid significantly and spread down her cheek. After a round of doctor visits and referrals (pediatrician, pediatric dermotologist (diagnosed and introduced us to the term "hemangioma", pediatric opthamalogist) we became aware of exactly how serious the condition could be. By being lucky enough to be in Los Angeles, which is a major children's health center, we wound up at Children's Hospital. We also learned about Arkansas Children's Hospital and their high profile doctor (currently featured in the cranio-facial special running on TLC and the Discovery Channel), Milton Waner. Since the swelling was causing Emma to keep that eye shut much more often than her left eye, there was a real potential for injury to her ability to see from that eye i.e. blindness. The treatment options were a.) shot(s) of prednisone (a steroid) to the area b.) systemic doses of prednisone taken orally, with which there were a laundry list of potential side effects and developmental hazards. Obviously, when the word "Blindness" enters the room, everything else leaves and you push aesthetics aside. We decided to focus all our efforts on dealing with arresting the hemangioma and working with her pediatric opthamologist. We tried the shot first. It worked great, in that a small area of her cheek immediately reduced its' swelling and recovered its' normal hue. Unfortunately in a short period of time, her hemangiomas (turned out she has at least 2) had grown beyond the area a single shot could help. Emma began taking a substantial dose of prednisone daily. She responded well and kept up that treatment for 14 months. Her vision at this point, is fine. We learned along the way that whenever she got a cold or a stuffed up nose, her hemangioma would swell alarmingly because her blood vessels were too blown out to wick moisture away properly. We learned all the stats about 1 on 10 children having vascular anomalies, about girls getting them more than boys. Theories about a relationship to left handedness/twins. The bottom line is we're very lucky. We're in a metro area with a local of medical expertise. Our pediatrician, unlike some, didn't say there's little they can do, it will fade with time, leave it alone (none of which is really true.) I've put some lessons we've learned, resources and other links in the next column. If you're interested or need more info., I really encourage you to follow them. There's been a tremendous amount of progress in treating this disorder/deformity in the last ten years but the really informed doctors are concentrated in a few places. |
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| Emma at 6 months |
| OUR CONCLUSIONS & OBSERVATIONS: |
| 1.) Involution: Hemangiomas do peak of their own accord and begin to fade and reduce somewhat. However, they grow far bigger than you think they will and cause changes to the tissue in the area. At a minimum, fatty tissue fills the voids around the blood vessels and the skin is left with some mottling/ birthmark. Although the doctors like to talk about 2 years, the reality is many (most?) cases take up to a decade to achieve most of their involution. The worst? If the hemangioma over stresses the child's skin's ability to grow and stretch, his or her skin will ulcerate and break open. Time is of the essence once you've noticed this on your child! 2.) Doctors are biased towards their own specialties. The eye doctors look at everything in terms of the eyes, brain doctors the brain. Surgeons solution is to operate, dermatologists look at the skin. You have to be your own general doctor unless your pediatrician is remarkably informed on this condition. Talk to the leading doctors in every area. Compare suggestions, try and get them to talk with each other. Each specialty has had advances that others aren't aware of. If you can find or communicate with a hospital that has a multi-specialty team to deal with this condition, that's the best place for you. 3.) Laser treatments only work for approximately the top 1/8 inch of skin. If it's a birthmark, that's great. If it's a hemangioma, you'll need something that treats the entire tumor. 4.) This can be fixed. Your child will be okay. Say it again twice. You just need to get the right medical treatment. |
| LINKS Dr. John Reinisch |
| Vascular Birthmarks Foundation (an excellent resource) Hemangioma Newsline (Good list of Doctors) |