Welcome to Ian’s Story

The name Ian came to us two years before he was born.  I had miscarried before Ian but it started the conversation between our step daughter. “What do you think about us having a baby?”

“I want a baby brother. I like the name Ian” she replied.

Ian means the LORD is gracious. Grace means to be given more than what we deserve; to exercise favor or kindness; beneficent. Those prophetic words carried us through the darkest of days.

A year later we heard Ian’s heartbeat for the first time. It was time to get ready for our first child!

My pregnancy was uneventful. One miscarriage and being under 35 kept us in a low risk category. 20-week ultrasound and routine blood work, that was it.

Ian was born October 2^nd. He was born dying. This medical emergency threw us in a crisis – the uncertainty of survival.

Ian had an undetected and prolific brain bleed while in utero. His MRI scans showed blotches of dark spots all over, hemorrhages. Only his brain stem and cerebellum, located in the deepest parts of the skull were untouched by this devastating injury.

The bleed destroyed 95% of his brain tissue and caused severe hydrocephalus (water on the brain). It took hours to stabilize him and the swarm of doctors gave Ian < 5% chance of survival.

“Your child’s brain damage is catastrophic, there’s nothing we can do.”

“He’s one in a trillion babies to survive what he went through, he will most likely not survive”

“He will have limited quality of life because of his brain injury”

These were the hopeful words of the medical professionals around us.

But we were given words of encouragement before all this tragedy unfolded – Ian means the LORD is gracious. Grace means to be given more than what we deserve; to exercise favor or kindness; beneficent.

After spending two weeks in NICU we were sent home on hospice.

When Ian was two months old he underwent an external draining of fluid in his brain. Over a timespan of five days Ian drained almost 2 liters of chocolate colored fluid. Leaving his soft skull plates sunken in, reminding us of how catastrophic this event was.

Ian at 2 months old; before his first surgery.

Ian after his ventricles were drained.

Again, we were sent home on hospice.

Any trained eye would take one minute analyzing his MRI scan and sigh with despair. Your child has… literally no upper-level brain tissue. Cannot process sensory stimulation because the tissue is nonexistent. Your child is blind, deaf, will never decide on preferences, no communication, no intentional movement, unable to learn. That is what it means to have no quality of life. Ian’s brain damage was so catastrophic how could any human overcome such an injury?

You may shutter and ask why I have provided such a detailed description of this. And I do this to emphasize the heaviness of his brain injury but to also emphasize what an astonishing child Ian is.

We knew Ian was a miracle baby and a fighter. Despite his prognosis and dismal expectations, Ian only improved.

At seven months Ian saw and laughed at a green ball. He was developing sight. He started making more mature tones with his voice. He was developing communication. He started throwing temper tantrums. He was developing preferences. He started reaching for toys. He was developing intentional movement.

How is that possible? Where does this progress and determination come from?

Neuroplasticity would be the most logical answer. Neuroplasticity is the ability of the brain to form and reorganize synaptic connections, especially in response to learning or rehabilitation following an injury. We do it every day and not know it. Learning how to ride a bike, a new job, a new language. It is the creation of new neuro connections in the brain. And for Ian, he is re-routing every function to his cerebellum.

In addition to neuroplasticity, we all know there is more to a personality than just brain tissue. There are other forces of nature – of our spiritual element or genetics – that factor into our development. Ian has shown us from day one that he is a resilient, strong willed person.

That combination makes his story so powerful. Despite such a horrific brain injury, Ian, for whatever reason, fought to live and fights every day to learn. Ian’s miraculous life motivates us to tell it.

How can Ian’s determination and desire to live inspire us?

We hope what you read gives you joy as you watch Ian succeed and learn. And we also hope what you read will encourage you wherever you are in life.

–> UPDATE: We are hosting a GoFundMe to raise money for two of Ian’s critical therapies. If you would like to give Ian a gift, please visit the link: https://gofund.me/014eccaf

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