In October of 2006, Finn was born during a beautiful, normal homebirth. He seemed to be developing just fine, but at two months old he was diagnosed with strabismus or crossed-eyes. Strabismus is relatively common and we believed at the time that this condition was isolated. However, at about three months – when he was really attempting to hold his head up – he developed an occasional, head-shaking motion and nystagmus or quickly darting eye movement. There was some concern that perhaps these occurrences were related to seizures, so we had an EEG done at about four months old to rule that out. The EEG was normal. However, the unusual head and eye movement continued, and soon after we also noticed that Finn was having trouble accurately reaching for and holding onto toys. Overall, he was having difficulty with his motor skills.
At the end of March 2007, based on our concerns and an examination by our pediatrician, he was diagnosed with ataxia (poor coordination and balance problems). It was recommended that we be seen at Children’s Hospital immediately. We were fortunate enough to get an appointment for an MRI at Children’s the following day. The MRI showed a lesion of approximately two cm in diameter on the left side of Finn’s cerebellum – the part of the brain at the base of the skull. They believed this lesion to be a cerebelar cavernous malformation (CCM), which is basically an area of malformed blood vessels that have become distorted in shape and filled with blood. (Later, of course, we learned that this was actually an AVM instead). The neurosurgeon that we met with that afternoon explained that this lesion had hemorrhaged at an undetermined time. He also told us that there was a small chance of it bleeding again and a future bleed could cause great damage. The neurosurgeon believed that it was the presence of the CCM and the hemorrhage that was responsible for Finn’s ataxic symptoms. We returned for a second MRI in the middle of May as planned. According to the same neurosurgeon at Children’s there was no new “significant” bleed. Unfortunately, Finn’s ataxia had not really subsided.
Since having a cavernous malformation is a rare condition and even more unusual in babies, we have felt ‘all alone’ for the most part. But in the middle of June, things started changing. One of our closest friends, who was also at present Finn’s birth, sent us an email. She had found this online organization called the Angioma Alliance (that somehow in all our searching we had never found). We immediately contacted them. The founder, and other people on the community forum, told us about a particular neurosurgeon named Dr. Robert Spetzler who is the director of the Barrow Neurological Institute in
On
We have all the hope in the world that by having done this surgery, we have given Finn the best shot he has at a normal life. Now, with the AVM gone, so, too is the possibility of a huge hemorrhage! Again, no one is certain of Finn’s future in terms of his development and abilities, but everyone does agree that a baby’s brain in particular has a high degree of ‘plasticity’ and that new pathways can form where others have been damaged. We are continuing to do physical therapy and working with doctors locally. And we KNOW that Finn’s own body is going to develop and grow as it needs to. We trust and have faith that ultimately he is going to be just fine.
Finn is truly an inspiration and an amazing blessing in our lives. We do not know what the future will hold for him, but we are confident that he will grow to the best of his abilities and thrive as a happy and whole individual. We still believe WITHOUT A DOUBT that he has every chance of being a completely ‘typical’ child and adult. Daily, we picture him first sitting upright – strong and steady – and then crawling, and then taking his first baby steps. Then, one day he’ll speedily make his way down the block on his tricycle and then another day even faster down the street driving a car. And then one day in the far, far future we’ll watch him walk down the aisle as he chooses to make his life with someone he loves. And hopefully we’ll be there on the day decades from now to celebrate with him as he welcomes his own son into the world. This is our dream for Finn – for him to live and know true happiness.
You can help us on this journey! Please keep Finn in your thoughts and prayers daily. We have VERY much appreciated the incredible outpouring of support and prayers we experienced during the time of Finn’s surgery. We were humbled and amazed. The love and light surrounding him was undeniable. We hope you will continue to keep him in your heart and mind as he continues to face his challenges and overcome them. When you do pray and think about him, please do so not with sorrow or worry, but instead with joy and abounding love. We ask that you continue to picture him surrounded by great healing energy and light. Visualize with us how Finn will be down the road – moving his body in beautiful, fluid, coordinated movements. Join us in our dream and prayer for a perfectly normal, healthy, and happy little Finn. He has filled us with wonder and amazement so much already, and we know he will do so even more as he goes on to overcome this completely.
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