My name is Tony Goulart and my wife's name is Teresa. On November 26th 2003 around 9:00P.M Our lives would change forever. Our perfectly normal 9 years and 10 months old girl experienced a headache, the only symptom she would have. Our daughter never complained nor did she have any symptoms of an AVM. The headache quickly turned to losing consciousness and vomiting.
My wife called 911 and when the paramedics arrived our daughter was drifting in and out of consciousness, but she was not expressing any pain. Her last words were her name Nicole Marie, age and the school she attended, Glenmoor Elementary.
By the time she arrived at the hospital she was not responding. At this time I arrived. I had left around 8:30 P.M. to get some last minute items for Thanksgiving dinner. The 26th was the night before Thanksgiving. When I arrived at the hospital. The ER Doctor showed my wife and I The ct scan of Nicole's brain. Her cranium was full of blood. she had had an intercranial hemorrhage. I was floored. What in the world caused this?.
The Doctor pointed to a mass in her brain. He was unsure as to what it was. He said it could be a number of things, Tumor. He was not sure. In any case she was in very bad shape and she would have to be transported to Children's Hospital In Oakland CA.
Upon Arriving at Children's, we were met With Doctor Hansen and Doctor Peter Sun. The head of the ICU dept and the leading Neurologist of Children's and well know throughout the medical circles. They spoke to my wife and I and told us the stunning news. Our daughter had experienced a fatal hemorrhage of the brain. Now they could operate but the odds were 90/10. 10% she could survive but would be in vegetative state for who knew how long. Well as any loving parents would choose we were clinging for any hope, a miracle that our daughter would come out of this and wake up and smile to us and say "I'm O.K". This would not be so.
At 4:30 A.M. Thanksgiving day Dr Peter Sun came to us and told us that Nicole would live less than 12 hours. She had a class 5 AVM that had ruptured. We were devastated. Our perfectly normal loving daughter who was a straight A student, well liked by her peers at school. An athlete who played baseball with the boys, in little league. Played basketball with our local CYO League as well as the north Fremont girls league, was elected Sargent of Arms of her 4th grade class and most of all a respectful loving daughter who never and I mean never said no to my wife and I was brain dead and on life support. My wife and I cried and hugged each other. In a few minutes we composed ourselves and came to the conclusion that our beautiful Nicole would not be coming home. The Nicole we knew was gone.
My wife and I knew what our Daughter would have wanted. Back In September I received my Drivers License. She asked me what the sticker was for. I told her that if anything were to happen to daddy, Mommy could donate daddy's internal organs. She was intrigued by medical situations. She wanted to become a pharmacist so she thought this to be fascinating after I explained it to her. I always told my daughter that the educated person asks questions. Never be afraid to ask a question in class that is how you learn. Never be shy. If someone makes fun of you ignore them. They just did not have the guts to ask. But you did and they would learn and respect you for it. They would not tell you they respect you but they would by keeping it to themselves. She old me if any thing happened to her she would like to do the same. I remember changing the subject. I did not want to think of that.
My wife and I made the decision right there and then to donate most of her organs. Seven in all. Heart, both lungs, liver, kidneys, both corneas. Our Beautiful, courageous Nicole went home to God on November 28, 2003 at 8:50 in the morning. The amazing thing of all this is she never had any symptoms. She was happy all of the time. Loved sports. Excellent student. Asked a lot of questions. We also did a lot as a family. We were able because of the type of job I had and my flexible hours to travel and enjoy many places on the weekends as well as school holidays or school workdays.
Her Vigil was attended by more than 1000 people. She touched many people in both life and death and she will live on.
My wife and I had never heard of an AVM until it happened to our Daughter. We have two younger boys ages 7 and 4. We have scheduled MRIs for them as well as for my wife and myself. Hopefully we will be OK.
I trust in God and know he has a plan for everyone. We are still reeling from this and our Holidays will never be the same. My entire family is devastated with what happened.
Update: 09 Jan 2004
Hello to everyone.
First, I would like to thank all of you that have emailed us with your thoughtfull words and also for your prayers. My wife and I, as well as our two boys, Rian 7 and Marc 4 have had MRIs done of our Brain and no AVMs Thank God.
The Hospital In San Francisco was great. We had to sedate our youngest . He was in no way climbing into that machine! It has been a difficult time for my family, but I have decided to do what I can in hopes of helping other people with this terrible condition. I did find new information which may be helpful to the site. At www.hht.org their is evidence that this may in fact be hereditary. My wife and I and both boys are going to pursue this Blood test to see if we in fact have this gene. My Daughter is gone, but we have to do something to help those that have no idea that they are a time bomb ready to go off at any moment. God bless you all
Update: 15 Mar 2004
Thanks to all of those that have e-mailed us. We have been assured by several doctors as well from genetic doctors of which we ran tests to look for any type of hereditary form that may cause A.V.M.s that our Daughters A.V.M was a congenital condition in her and that our two boys as well as my wife and I are in the clear. We are thankful for this, but our pain for the loss of our Daughter is overwelming. If we only had a symptom, maybe the outcome would be different.
Thanks to all for your prayers and comments.
Please read "The Argus" newspaper's article about Nicole.
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