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Patients' Stories |
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Born with a rare venous malformation, Angela is now a happy and healthy 23-year-old thanks to doctors at Childrens' Vascular Anomalies Center. Read her story in her own words.
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To meet Ryan Brewitt, a chatty 3-year-old whose smile lights up a room, you'd never know he has one of the rarest conditions ever seen at Children's.
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Andrea has a venous malformation (VM), a painful condition that, because it is close to her airway and brain, could be life threatening. The malformation has progressively worsened since Andrea was born, and makes even smiling difficult for her.
Andrea's smile, though it looks different and sometimes causes her great discomfort, is the reason her parents have looked far and wide for help.
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For Dawn and Jeff Methven, a couple from Florida, support from the AFCC and the VAC gave them something they may otherwise have been without during Dawn's pregnancy: hope.
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I have been a patient at Children's Hospital Boston for six years, I have been an employee at Children's for two years, but I have had blue rubber bleb nevus syndrome all my life.
The Vascular Anomalies Center at Children's is the best place in the world for your child if he or she has vascular anomalies. I think explaining how I got to Children's will help you understand why.
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| Angela (middle) and friends at the beach. Photo by Nicholas Marchese. |
I am originally from California, about five hours north of San Francisco. When I was two years old, doctors in San Francisco diagnosed me with Klippel-Trenaunay-Weber Syndrome. I found out 14 years later that this was a misdiagnosis. However, at the time, I received the best available treatment for that diagnosis.
My condition consists of internal venous malformations. Rarely do they show on the skin. This might be different than other cases of Blue Rubber Bleb Nevus Syndrome or other vascular anomalies conditions, where vascular malformations are more easily detected on the surface. Dr. Steven Fishman, co-director of the VAC at Children's, once told me that I have "Angela's Syndrome." That shows the level of experience of the VAC at Children's; they understand all different vascular anomalies conditions and that each patient may have a unique type requiring unique treatment and care.
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When I was about 15, a series of events forced my family and me to make a decision. I could continue to be seen in San Francisco or we could travel 3,000 miles across the country to Children's Hospital Boston for more specialized care. The doctors in San Francisco reviewed my latest MRI and said they felt as though a treatment could be done, but was not necessary.
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In the meantime, we spoke with doctors at Children's who told us there was a lot they could do for me. So we decided that we would go to Boston, meet the doctors and see what they could do.
Only by a miracle from God and the generosity of a friend and doctor at Children's were we able to afford to make the trip.
When we got to Children's, the doctors showed us the same MRI that doctors in San Francisco had reviewed. Dr. Fishman pointed to a grey blob on the picture that took up about half of my insides. He told us it was a venous malformation, and that the Vascular Anomalies Center could help me and that he could remove the mass.
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The summer of 2000, three months after that first visit, we flew back to Boston and Dr. Fishman performed surgery on my stomach. He removed one mass of blood vessels from my abdomen that was the size of a cantaloupe, three masses the size of lemons from my back and two masses the size of walnuts hanging off of my liver. (I'm not sure why all were described using food analogies, but those were Dr. Fishman's words.) Later, Dr. Fishman told us the mass in my abdomen was probably the single largest venous malformation ever removed from anyone in the world.
The way my condition works is that the blood vessels genetically reproduce, which is a scary thought. How much bigger would that mass have gotten? The risk of internal bleeding was so great and so many things could have gone wrong if I hadn't had it removed -- if I hadn't come to Children's.
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I still come to Children's about once a year to have sclerotherapy treatments on smaller masses, and since the stomach surgery, I have had surgery on my knee to remove another large mass.
The knowledge and dedication at the VAC is incredible. They understand things that most doctors can't even begin to grasp. The staff at the hospital is incredible, too; the patient care is the best in the world.
I am now also an employee at Children's. After graduating from high school, I came to Boston from California to attend to college. And now, after graduating from college, I am working at Children's. In some way it's my way of saying thank you and it shows just how much I believe in the hospital.
I'm not going to lie and say my life is perfect and I'm out running the Boston marathon. But thanks to the doctors and the Vascular Anomalies Center at Children's, I am a normal young adult -- working, going out with friends, very involved with my church, and enjoying the life God gave me. I am so thankful!
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If you have questions or comments, please send me an email.
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Read more
Click here to learn more about Angela and how Childrens' Vascular Anomalies Center treats her condition.
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