Life Beyond a Diagnosis

We are starting this page to share the strength of our son Pheonix Matthew and hopefully inspire others by seeing the world through the eyes of a child born with a rare brain disorder.  This post will be the only mention of what Pheonix “had” because he never lived his condition.  Pheonix was born with bilateral schizencephaly.  It is the second rarest brain malformation with a probability of 1.48 for every 100,000 births.  The exact cause of the disorder is unknown, but believed to be in the very early stages of development.  Bilateral means there are abnormal clefts on both sides of the brain and the individual often suffers more difficulties than other types of the disorder.  Individuals with this disorder have symptoms that can include mental retardation, poor muscle tone, scoliosis, small optic nerves, and uncontrollable seizures.

I remember sitting in the doctor’s office after Pheonix had an MRI prompted by a noticeable delay in development at about 9 months old, and looking astonished at the image of his brain.  I asked the doctor where was his brain.  All I could see were oddly shaped masses of grey and white.  She traced out a shape of the grey portion.  I asked what the rest was and she told me it was cerebral spinal fluid built up in a hollow spot in his brain.  She explained that the fluid was building up and he would require a shunt to be placed to alleviate the pressure.  I sobbed and asked what this meant for him.  She stated that if she had never seen this patient before and was only basing the diagnosis on the MRI, she would believe the patient to be a vegetable in a bed.  I felt my heart plummet.  She then stated though that clearly was not the case for him.  We were going to have the surgery and go from there.  She said he would likely be small, have seizures, and live 2-3 years due to complications of his disorder.  I asked the nurse when we were preparing to leave if Pheonix would suffer great pain due to his disorder.  She simply remarked no and that he would likely be euphoric and not know what was going on around him.  I told her that sounded worse.

Pheonix had his first neurosurgery at 14 months old.  I remember standing over the crib in the hospital in tears as I looked at his tiny body, shaved head, and the huge black stitches.  He opened his eyes and reached out his arm to grab his much loved binky next to him.  He pulled it to his mouth and I knew right then that if Pheonix wanted something, he was going to get it.  Expecting that Pheonix likely had little conscious connection to what was going on around him, I did not know what life would be like for him.  We were sitting on the couch watching my favorite Mickey Mouse cartoon where the seal sneaks into the bathtub with Mickey.  When the seal starts scrubbing Mickey’s head and Mickey seems confused how this was happening, Pheonix laughed the most beautiful laugh.  I looked at him and was amazed that he understood the humor.  He looked at me with his big blue eyes and smiled, telling me he was in there and asking me to help him.  My step-dad said that Pheonix would be whatever we invested in him and he would only stop when we stopped.  He immediately started Help Me Grow, therapy at Children’s Hospital, and early learning experiences.  He found others who believed in him too and could feel his radiant soul pushing past the limits of his body.  Pheonix had a spirit for adventure and was not going to let his physical limitations stop him from experiencing everything this earthly life had to offer.  We are sharing the stories of his experiences and triumphs so that the hope and strength he gave to others will continue on.  He had a light inside him that was projected through his smile and a spirit that resounded through his laugh.  The moment I heard that beautiful laugh, I decided he was going to live a life beyond his diagnosis.

3 thoughts on “Life Beyond a Diagnosis

  1. What a gift, Denise.
    A gift possessed within you, within Pheonix, and now within every person who has the privilege to experience this story.

    Beautifully written.


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