Jessica Bailey

Jessica’s Story

Born August 13th, 2004

My daughter Jessica was diagnosed around 9 months of age with her VGM. She never had hyrdocephalus, but her head circumference kept increasing. When she went for her first angiogram, they decided not to begin treatments, because it looked as if her body might have adapted to the malformation. Then December of 2006, she was diagnosed with CHF, and put on medication to help with that. Now April 9, 2007 she had her first treatment angiogram with embolization to start the process. They used that “glue like substance”. She will need many more treatments they said. They accidentally damaged the vessel in her right leg during the treatment. WE are scheduled May 7, 2007 for another treatment, and then again June 4, 2007 for another one. They want to continue every 4 weeks, until they can slow down the blood flow to her heart. Then they will do the once a year treatment. All I know is the doctor said she is very complicated, and there are numerous vessels opeining up, or they are not large enough yet to treat. I know this is taking a toll on us financially, we have to travel 3 ½ hours every time to go to the treatments, my husband takes off from work to be with us, and then I have to get a babysitter for my other two children ages 7 and 18 months while we are away.

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About vogadmin

Vein of Galen UK is a website dedicated to families and sufferers of Vein of Galen malformation all over the world. We provide information and support for families affected by this condition.
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One Response to Jessica Bailey

  1. Wendy Bailey says:

    Update on Jessica, She endured a total of 37 treatments, 5 strokes, 2 were major. Her congested heart failure was getting worse, so Dr. Pincus At Shands, decided to “become more aggresive”, She was scheduled for a craniotomy,on March 6 2012. At the age of 7 years old, this was her 38th surgery. We decided to do what the doctors felt was best for her, we could see her declining at home, tired, breathing hard, her little heart was so enlarged, and she was using a wheel chair for distance due to breathlessness. Well we left the night before, had sitters for her sisters, saw The Lorax, she was so happy, and brave. The next morning, her dad, me and her “bunny” all went for the surgery. The last words I said to her was “I promise I will be there when you wake up, I love you baby girl”, She replied back “I love you mommy and daddy, I will be brave, I am ready to go”. They took her back at 8 AM, and at 5:30, we got the news, she hemorraged, Dr. PIncus told us “Your daughter is going to die”, I am so sorry, we did everything we could do”. We went to her bedside, and at 6:37, as I was laying next to her, she took her last breath, her tired heart stopped beating, she lost the battle. We were blessed to have her in our lives, We were blessed to raise a beautiful brown eyed little girl for 7 years, we will live for “Jessica” now, I will keep her memories alive. My prayers go out to all the other parents, dealing with VGM. xoxo

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