Making Strides, One Step at a Time...A Brain Injury/AVM Survivor Story

Maureen was a typical healthy, active 8 year old who was always running and skipping, had many friends, loved sports -especially soccer; she was on the travel soccer team in town and had a pretty good foot. Her Rec coach in 2nd grade nicknamed her "Foot" because she had such a powerful kick. If she wasn't outside playing soccer, she was inside reading, drawing or writing stories about animals; she was in the top reading group in her 3rd grade class. She was very silly and giggly, caring and so sweet. Wherever we went she would hold my hand and skipped beside me chattering about something. She always knew how to cheer me up if I was down and took care of me and her brother if we weren't feeling well. She was my best bud.
On November 18, 2010 life would change as we knew it. I received a phone call at work from my sister saying that Maureen was having trouble with her eyes when she was on the bus coming home from school that day so I said I was coming home.
When I arrived I found Maureen curled up on the couch sweating profusely with her eyes shut. She said it hurt to open them. I also found out that her brother had to help her into the bathroom because she was having trouble seeing and then she threw up all over him. I asked her questions about the day, did you hit your head, what did you eat for lunch, did you fall? She said nothing like that happened and she just wanted to sleep. There was something in the way she was speaking that wasn't quite right. I knew something was wrong. I was crying at this point and so nervous. I had to get her to the ER. I remember her saying to me, "Don't cry mama. I'm not going to die." I thought, what a strange thing for her to say, of course she wasn't. But she knew it was a possibility at the time.
When we got to the ER, they checked her in right away, took her vitals as I told them her symptoms. She had vomited once more, she was still sweating and her eyes were shut. But it was her voice that was odd to me. The nurse told me it could be something as simple as Lyme Disease or a virus. She was able to tell the dr exactly what happened that day and how she felt. He thought maybe food poisoning or possibly a trauma to the head she may have sustained while playing sports. I tried to remember her falling or something but nothing came to mind. He ordered a CAT scan of her brain and when he returned, he called me out of the room where Maureen's dad was. I knew it couldn't be good. He said to us "She is bleeding in her brain. We have to get her to Children's hospital right away. This is serious." WHAT???  I asked if she was going to be okay and all he could say was "I don't know."  Everything went in slow motion from there. It seemed as though the entire ER dept stopped. Nurses were crying, we were crying, EMTs were preparing her for Life Star. All I could think of was how did this happen? She was fine that morning. Everything was normal and now she is in life threatening condition? It was all so surreal. They induced a coma, had us say our goodbyes to her and life-starred her to Children's hospital in Hartford where the nuerosurgical team was waiting. Was I ever going to see her or talk to her again? Would she be normal? It was all too much to take in. They put a drain down inside her brain to drain the excess fluid and kept her on a breathing tube for the next 6 days. It was horrible to see her like that. But much to the amazement of the staff, she was making remarkable progress. They thought she would be hospitilized for a few months but left using only a walker and some eye issues after only 12 days. She was a miracle! By Feburary she was caught up in school and almost back full time. She was walking normal and playing, even her eyes were healing. We were getting back to normal.
During that 1st stay we found out during an angiogram of her brain that Maureen had a congenital defect in her mid-brain called an AVM (arterio venous malformation) that ruptured. This is where arteries and veins get tangled without the needed blood vessels in between to slow blood flow, eventually wearing out the walls of either vein or artery causing a rupture. It is a rare condition and even more rare to rupture in children. She had this at birth and we never knew. It was treatable with a one time extremely high radiation session to the lesion. So we were preparing for this to happen Feb 16, 2011. She had all of the proper tests done, appointments with the oncologist to explain the procedure, MRI, angigram, blood work, CAT scan. It turned out that the lesion was much smaller than anticipated so they had to change the procedure a little and postpone it to the following week, the 24th. She never made it.

On Feb 17th, just 1 day after the original treatment was going to be done, and 3 days after her 9th birthday, Maureen had a 2nd rupture. It was unreal. During her 1st stay, her father asked her nuerosurgeon what the chances were of a rupture happening again. He said the chances were so small that we wouldn't even talk about it. We were all shocked. The chances were a small percentage but they were always there and unfortunately someone has to be that percent. Maureen was in that percentile.

This 2nd rupture was a little larger so it affected more areas of her brain. Maureen was hospitalized 11 weeks this time. For 2 weeks, she was sleeping 23 -24 hours a day, only waking for seconds to minutes at a time. Apparently the bleed affected the sleep/wake cycle area of her brain. After trying several methods of getting her to wake more frequently, eventually she was awake enough to interact with us. We had to hold her up because she was unable to move, she couldn't even open her eyes, she couldn't talk, but she was still able to laugh so we joked around often. She had a feeding tube through her nose because she couldn't eat or drink on her own and eventually a G-tube going right into her stomach. 
Once she was awake enough, she had therapy every day except Sunday: physical, occupational, speech, and eventually some school. After 6 weeks of not talking or being able to eat or drink, she was finally able to do all 3. Things came back slowly and along with it, feeling in parts of her body. She ended up with a very painful nerve condition in her foot called neuropathy. This condition kept her awake for 3 weeks so therapy had to be stalled. She was in so much pain. Once that was under control, we could concentrate on her therapy again.
She was like a limp noodle. She lost all muscle coordination and was unable to do simple tasks. She couldn't sit up, feed herself, dress herself, walk, needed help getting to the bathroom, into her wheelchair, into bed. She also had a muscle condition called ataxia which made her leg and arm muscles jerk and shake every time she moved them, making it difficult to do anything, including write. 
Because of her many needs and dependency, I had to quit my job to become her full time caretaker. I fed her, bathed her, dressed her, carried her up to bed, in and out of the car. She had therapy and dr appts up to 7 times a week for over a year. Being a single mom, I was the only one to do all of this but I was the best one for the job.

Maureen got hit with so many deficits from her 2nd bleed. She is now in Special Ed with learning disabilities, difficulties writing, understanding concepts. She is in 6th grade but at a 2nd grade level. She has had to relearn basic math, telling time, reading, tying her shoes, feeding herself, etc. She has fine motor skill deficits, eating and drinking problems. She has behavioral issues where she can't control what she says or does and can be inappropriate or become very aggressive, which she never was before, or behave younger than 12. She lacks the appropriate social skills at times and she is very impulsive. She still has ataxia to an extent but that has improved dramatically. Her neuropathy finally went away but she also has some sensory issues with hearing and touch. She has been in a wheelchair since 2011 but I can now bring her into places she doesn't need to walk far by holding onto her arm. She went from scooting, to crawling, to a few steps, to 20 steps, to walking around outside and indoors. She still falls but it is a miracle she can walk on her own at all. She has had to relearn so many skills and even now, after 3 years, still has many to overcome but she is still doing it. She never gives up. She has physical therapy at school and once a week at the hospital, as well as horse therapy in the spring and fall and camp in the summer.
She also has damage to the 3rd optic nerve so she has many problems with her eyes. She has double vision when she opens both eyes so she always keeps the right one closed. She is able to see but she will always have double vision due to the nerve damage. Her right eye ball is off centered and her eyelid lacks muscle control. She will be having eye surgery this summer to correct these issues. She is reading again with the help of reading glasses and is doing very well in school this year. Learning for her did not happen for 2 years so it is such a great joy for her to have homework and to hear her tell me the things she learned that day in school. She has made the honor roll and high honor roll this school year so far.
She still has problems with sleep and gets overwhelmed and extremely tired from tasks we do everyday. Because of her fatigue, which is a common symptom of brain injury, she has a shortened school day and misses more than the average student. Some days she will sleep up to 16 hours. Because of her shortened day, missing school and her continued therapy, I am still unable to work. I have some medical issues myself now as a result of being a caretaker and primarily doing this on my own for 3 years. They are not serious but I am not unable to work right now. If you told me 3 years ago, I would still be care taking full time, I wouldn't have believed it.
Every brain injury is different and Maureen's happened to be complicated.
Maureen has come so far and I am so proud of her. It is so sad that she lost so many skills and has had to fight to get them back but she is still the same silly girl and I am loving her even more. She is such an inspiration and my life is dedicated to making sure she gets as far as she can in her recovery. It will take as long as it takes and with the help of God, she will go further. She finally had her radiation treatment in May 2011 and I am happy to say she is AVM Free!! We never have to worry about another rupture and can focus on her recovery.
Brain injury recovery is a long and difficult process. I had no idea the length of time recovery would take. Maureen's neurosurgeon told me a few months after her discharge "This isn't just a race you're in. You're in a marathon."
He was right and we get closer to the finish line every day.
Thank you for reading.