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AVM Survivors Network

AVM rupture causing death

My story begins on November 4, 2011 when I went in at approximately 5:15 a.m. to wake my sleeping daughter Taitlyn for school. Taitlyn got up and said "Mommy, I don't feel well today". I told her that she would need to try to go to school as she had already missed one day this week due to fatigue and a headache. She told me she would go ahead and get ready. She went and put her clothes on. I went to lie back down. She came in a few moments later and told me "Mommy, Mommy....my head really hurts". She was crying, which was very rare for Taitlyn, so I knew something must be wrong. I asked her where it hurt. She put her had on her entire forehead. I assumed it was a migraine headache as her father and I both have migraines. I began treating it as such. Unfortunately, it wasn't that at all. A few moments later Taitlyn began to vomit. She said it wasn't getting better. She then became unconscious and her breathing was labored. At that moment I became scared, screamed for my husband to call 911 and began PRAYING. I thought at first she was just having a seizure but she was completely unresponsive. When the paramedics responded they assumed she had a drug overdose. When she didn't respond to the treatment, she was rushed to the hospital. At our local hospital, a CT scan was completed. It confirmed that our sweet, 12 year old beautiful little girl had a brain hemorrhage and we were told the outcome didn't look promising. Taitlyn was airlifted to Children's National Hospital in Washington DC for continued treatment. There another CT scan was done and the neurosurgeon confirmed that Taitlyn had experienced a brain hemorrhage due to a ruptured AVM. AVM? I had never heard of such a thing. Prior to November 4th, Taitlyn really didn't have any symptoms other than a headache here and there. We were told that her brain was swelling and spinal fluid was also getting into her brain. A shunt was in place to drain the fluid and we were told that Taitlyn would remain in the PICU for further monitoring and observation. The neurosurgeon said he was "cautiously optomistic" that Taitlyn would survive. He notified us that she would receive the best care possible and that we would need to "sit and watch" as the brain swelling went down to see the extent of the damage that was done due to the rupture. After that evening another CT scan was done and we received the worst news a parent could ever receive involving an AVM. She had a cerebral AVM close to her brain stem. Brain death was inevitable and death was just as likely. She was taken off of the ventilator on November 6, 2011 after we were told she would not be able to make it off of life support. Her healthy organs were donated. Her visitation took place on November 11th, funeral the 12th and her Memorial Service just yesterday on November 20th. Me, well I have another daughter 14 years old and two sons, one, 6 and the other 4 so I have no choice but to be strong. I am having an extremely difficult time dealing with this shocking, devastating occurence as you can imagine. However, the one thing that keeps me going is that I know Taitlyn is rejoicing in heaven and I WILL see her again one day. Much love to you all... Nicole

Hi Nicole. I just posted this on my FB status...A person that loses a partner is called a widow. A child who loses a parent is called an orphan. But there is no word to describe a parent who loses a child, because that loss is like no other. So will you put this as your status for just 1 hour?? I'm pretty sure I know the ones that will. Think of someone you know or love who's lost a baby or child, & take a few minutes to remember & honor their angel.

Our condolences to you and your family.

Nicole, I'm so sorry to hear that your Taitlyn is no longer with you here on earth..I also am a true believer that Taitlyn is rejoicing in heaven and will be with you again one day! Perhaps God needed your little angel for some unknown reason, but please believe that she will be in your arms again one day! Your friends from this Network are here to support you. My thoughts and prayers are for your entire family and friends!

Nicole, I am so sorry and my thoughts and prayers are with you and your family at this time. I think I can say without a doubt that every single person on this incredible website is here for you if you need to talk, we are all here to listen. This breaks my heart so much even though I may not have known her as she looks like an absolutely beautiful person with an amazing heart and soul that would have touched so many lives. All my love, Kat xx

I am so sorry for youe loss. My thoughts and prayers are with you and your family. Taitlyn was such a beautiful girl. she will be in ur arms again one day. All my love
Nayleen

i am so sorry to hear this news thimkin of u all at this time xx

Nicole, I could never imagine your pain. As a parent, I give you my AVM love, support, thoughts & prayers to you and your family. Your beautiful angel is rejoicing in heaven and, on day, you WILL see & feel her again.
Thank you for having the courage to share Taitln's story with us. XXXX

Nicole,

I have no words that would do justice to what you have been through. I am so sorry for your loss and thank you for sharing your story.

Love and prayers,

Holly

Hi Nicole,

I only wish there were something I could say or do to help ease the suffering and pain that you and your family have to endure with the loss of your precious angel Taitlyn. I am a true believer that your faith will give you the strength to persevere thru this and your precious Taitlyn is now living her eternal life for which God needed her for and is also setting up home for when you see her again!

Much love and prayers for you and your family thru this time of loss!

/Michele

I am so sorry to hear this. Please find comfort in knowing that GOD knows what is best. Thank you for the donate, I can only imagine how hard it was but how grateful others are for your decision. Please find strengh in prayer as I will be praying with you.

Nicole,
I am so sorry! I pray the Lord will wrap you in His arms and give you and your other precious children His peace and strength to get through this. God be with you,
Dianne

Nicole,

I am so sorry to hear about the loss of your beautiful girl Taitlyn. My son was 13 last Oct 2010, when they discovered his AVM after a seizure. He did not have a bleed though(thank God). He had surgery this past Jan. He is doing good, but there is still a small 1cm AVM, so it wasn't obliterated. I cannot even imagine the pain you are going through right now. I so so sorry. As you said you will see her heaven one day and knowing that she is with our heavenly Father can give you comfort. May you find peace in all of this and especially this Christmas season. God bless you and your family. I will be praying for you.

Nicole,
I’m so so sorry to read this. I, too, am now acquainted with AVMs because my 10 year old son died 2 moths ago from the same thing. He never had any symptoms until he did that morning, and he was gone within a few hours. I’m shocked and stunned, having had no idea nything like this existed or was possible. My son, finn, was a happy and healthy little boy up to the very end. I hope you have found peace in these past 4 years.

I found this community after googling about AVMs when my 9 year old daughter died 2 months ago with eerily similar symptoms. Brooklyn was my youngest child. A loving, healthy and very happy girl. As the baby of the family, she made sure she was seen and heard at all times. Our house is so quiet now. She clearly was the center of all activity. There is an unmistakable void. There are times where I can think of her and smile, but more often it brings tears. I miss her so much. I pray that my family is able to find peace one day.