Nov 28, 2005 8:02 am US/Mountain
Singing Stops For Girl, 14, With Dangerous Disease
by Molly Hughes
DENVER (CBS4) ―
The family of Erienne Romaine has a special reason to be grateful on this Thanksgiving. They're thankful for Erienne's life while knowing that her future remains filled with uncertainty.
The 14-year-old is a song writer whose voice has been silenced by fear.
"My worst fear ... for a while I thought it was death," Erienne Romaine said. "Then I think that's the easy way out. I think my worst fear would be brain damage or being paralyzed."
Erienne Romaine learned to sing jazz about the same time she learned to walk. Her father, Paul Romaine, is a noted jazz drummer.
Erienne's career had just started to take off. Then, last July, she was rehearsing in her basement when something happened.
"I was singing and all of a sudden I was feeling really really dizzy," Erienne said. "The pianist was taking a solo and the next thing I knew I was on the floor."
"She was still breathing, her eyes were open and she was looking at me but it was obvious that she just was not there," Chris Romaine, Erienne's mother remembered.
Paramedics rushed Erienne to the hospital and into a CAT scan. One test and doctors knew Erienne Romaine had a time bomb ticking in her brain. It's called an AVM.
This is a schematic of what an AVM is," Dr. Don Frei with Radiology Imaging Associates said. "It's just a very unusual tangle of blood vessels."
Those tangled blood vassals can trigger massive bleeding.
Doctors said in Erienne's brain, the tangle is about the size of a golf ball.
Erienne was born with the AVM, but she never knew it was there until it started bleeding. Most people never find out they have an AVM.
They can just collapse and die," Frei said.
The only treatment for an AVM has traditionally been surgery. Patients often don't survive.
Surgery in Erienne's case would be very dangerous right now because the AVM is big and deep in her brain. Instead, Erienne went to Swedish Hospital. She became the first patient in the Rocky Mountain region to undergo a different procedure. It doesn't involve any cutting.
Dr. Frei injected a newly approved substance called Onyx directly into Erienne's AVM.
"The tip of the catheter is all the way into the AVM," Frei said.
The Onyx works like lava. It flows and then hardens, cutting off the blood supply to the AVM.
Frei will inject Onyx into Erienne's brain several more times over a period of months. The treatments should shrink the AVM until it will be easier to remove by surgery.
Erienne came through her first injection of Onyx with flying colors.
Erienne has had to drop out of life while the treatments continue. Her doctor worries that any experience that could raise her blood pressure would cause the AVM to start bleeding or cause a stroke.
"Basically it's me and the house and my buddy the AVM you know," Erienne said.
She spends days at home writing in her journal and working on the computer.
She can play the piano, but the doctor has said she cannot sing.
"When something is taken away from you, you know exactly how much you miss it," Erienne said.
Erienne is learning a lesson many people never learn about life.
"The fact that I could die," Erienne said. "It could happen any day."
"And I think, I think I have found how strange it is how attached humans are to life," Erienne said.
Erienne's family does not have insurance. Their bills for Erienne's care will likely exceed a quarter of a million dollars.
Friends and family have helped Erienne produce a commercial quality CD of her vocal work. All the money from sales will help the family pay medical bills.
Additional Resources
- Erienne's CD, The Scenic Route, can be purchased online at www.erienneromaine.com or by mail. Donations can be sent to Musicians Relief Fund, 4505 W. 36th Ave., Denver, CO 80212.
(Copyright © MMV CBS Television Stations, Inc.)
