Help! My 20 month old has a brain AVM

Tuesday Jan 26, we were sitting at home and our little girl was asleep in my lap. She opened her eyes, pupils fully dilated and her heartbeat was irregular. She wouldn’t respond to us for about 10 minutes… We got in our truck and headed for the er, on the way to hospital she started talking and was acting like herself. She started vomiting. When we got to the ER they decided to do a CT scan, which should a spot on the right side of her brain. They transported us to Children’s Hospital in Birmingham Al where they did an
MRI. This showed that she has enlarged vessels in the right side of her brain. On Friday they did an Angiogram, which confirmed a Right Hemispheric AVM. We are waiting to consult with the Ped. Neurologist to decide what corse of action we need to do. We need some advice!!

Amanda, I’m so sorry you are going through this! It’s hard to give advice. I do recommend you research your doctor. Researching AVMs is frightening and since each case is so unique it is likely wasted effort. Understand that regardless of the percentages the only outcome that matters is before you. Help your daughter to heal by doing as much of the normal stuff as you can. Is she awake and responsive? Even if she is not, read her favorite books and play music she loves. You may be in for a long journey. We had to wait three weeks in the ICU after my daughter’s bleed before we had the angiogram and found out that it was operable. After that things moved very fast - the AVM was removed and we were home in a week. Some people have treatment for many years. My advice is to get through today. And then get through tomorrow. And just keep doing that.

Oh Amanda, my heart goes out to you! If you need anything at all at any point, please please please get ahold of me. This is all so very new to you and so hard to deal with, I know. I will be praying for you and your beautiful little girl. I will also be praying that the doctors have the wisdom they need to to what is best for your princess. And like Rebecca says, try to keep everything as normal as possible. My daughter loves Backyardigans, so we brought a portable DVD player to the hospital with a bunch of DVDs to play for her while she sat in bed. Take pictures… lots and lots of pictures. Play as much as you can! And take care of yourself - your baby knows and feels when things aren’t right with mommy, so do what you can to keep it together for her. Even if it means that you take “breaks” long enough to leave her and cry. Make sure that the doctors you are dealing with have experience and knowledge. I could type a book to you right now, but it’s late here and I need my sleep. I will say a prayer for you tonight. Good luck

You have a beautiful little girl. I think you will find this website and the wonderful people on it a great means of support as you try and understand what is happening.

Hello, I was treated by Dr Fisher at Kirklin Clinic at UAB in Birmingham. Gamma Knife in March 2009. I go back in October for my 18 month check up. I also see Dr Hull, Neurologist, in Huntsville, who is great to work with. If you ever have any questions or want to talk with someone nearby just send me an email or reach me on facebook. Good luck, Robert