3 August 2004
Unfortunately my experience with AVM didn't turn out as well as most do. My son Evan was born on May 27, 2004. I was induced into labor due to low amniotic fluid but other then that Evan was a beautiful and strong, healthy baby boy. He was kept in the NICU for 5 days. Since Evan was premature he had not developed his sucking reflex so they had to teach him one before he was able to come home.
After Evan came home everything was smooth sailing until the morning of July 1st. While I was trying to feed him, he started screaming. This was EXTREMELY odd because Evan was a PERFECT baby. He rarely cried at all. He started vomitting, and he was doing this weird thing that at the time i thought was just a hiccup. So I called his doctor and she told me that he could just have an upset stomach but if it would make me feel better that maybe I should take him to the hospital. Thank god I followed my maternal instincts. We went to the emergency room and they took Evan to the ER immediately.
It only took us 15 minutes to get to the hospital and by then he was extremely pale and lethargic. They ran a series of tests including a spinal tap and a CT scan and found that he had severe bleeding in his head. We were rushed up into the PICU and before I knew it, Evan had stopped breathing. They put him on a ventilator and put a tube in his head to reduce the swelling. He was connected to more machines then I have ever seen in my life. The neurosurgeons came in and told us that they thought Evan had had an AVM and explained to us what that meant. They couldn't be sure but they would have to run more tests.
Over the next week or so Evan remained stable thanks to the machines. Things seemed to be getting better, his MRI came back and it showed NO evidence of any remaining vessel problems, which meant the AVM had vanished. They took his breathing tube out and the tube out of his head. My family was so excited until the next day when Evan started oozing fluid out of his stitches on his head. His breathing slowed down and they had to reintubate him. Before we knew it, there was a tube back in his head and they were running more tests.
The next day we were told that a CT scan showed that Evan had severe brain damage and that there was no hope of him ever leading a normal life. We were told that he probably would never be able to breathe on his own. We were advised to sign a DNR. After 48 hours of horrific contemplation, we decided to let Evan go. We were told that he probably wouldn't last long. Evan lasted 3 days after we took him off the ventilators. After his last breathe, it took his heart 3 hours to stop beating. Evan died in my arms on July 19th, 2004 at 11:23 pm.
Those 19 days in the hospital were the worst in my life, and I never wish that experience on anyone. AVM is such a horrible thing, and unfortunately so little people know about it. I really hope that anyone who reads this sends the petition out to more people and helps more people become aware of this danger. Unlike many people, my son didn't survive AVM, and if there is anyway that we can change it so that a mother doesn't have to go through what I went through, I'm willing to do it.
© Copyright 2004 Jessica
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