The Brady Wynn Foundation Story

Our precious bundle, Brady Wynn, was born 5/21/2019 weighing in at a whopping 9lb 4 oz after a seamless pregnancy.  His delivery was a little rough.  We got to the hospital around 11 pm 5/20/19 and my water broke instantly which meant no time for an epidural.  After hours and hours of pushing they gave in, which we thought meant it was C-Section time, nope.  Brady was finally born at 6:51 am and all seemed perfect.

Fast forward two weeks and we had our baby to the doctor three separate times because he was inconsolable. We were told he was a fussy baby, he had reflux, he was colicky but we knew in our hearts there was something more.  We took Brady to the chiropractor while trying everything to help make our little guy more comfortable.  She mentioned he didn’t have a soft spot.  I looked at his most recent doctor appointment notes and his head circumference had gone from 30% at birth down to 3% in two weeks! 

On June 9th we decided to take him to Children’s Hospital of WI.  They too were going to send us home but Brady spiked a fever he didn’t have when we arrived.  If you are not aware, when a baby under a certain age gets a fever, they automatically do a spinal tap to rule out infections.  We were admitted over night to wait for results- which came back fine.  We pushed for more testing on his head. The on call ped said “this is nothing neurological, he’s gaining weight and nursing, neurological babies don’t do this”.  He was very wrong.  The next day they did a CT which showed his brain had not grown since birth, followed by an MRI that showed cysts all in his frontal lobe. Your frontal lobe makes you, you. It controls your creativity and personality. From there we met more doctors and teams than I can even remember.  He had an EEG (electroencephalogram to record brain activity) which made doctors think he was also suffering from seizures.  After many nights at the hospital, they sent us home with our sweet boy and a binder full of appointment schedules, medication dosages and times and connections to set up appointments with local therapies.  Bradys team consisted of Palliative care, neurology, physical medicine and rehabilitation, dietitian, OT, PT, genetics, and his regular pediatrician. 

Palliative care told us between 4 and 6 months would be a crucial part of how Brady’s life would go. Babies are born with a sucking reflex that goes away between 4 and 6 months when babies learn to do this on their own. Sadly, our Brady never did. We tired an NG tube (tube that goes through the nose to the stomach) but his little body couldn’t process food well and he puked most of it up. Bradys life was very challenging and unknown and we did everything we could to keep him comfortable.  Brady passed away peacefully wrapped in our arms on 11/3/2019.  He went on hospice 10 days before he passed away so he could finally be fully comfortable and we could love on him every second he had left.

Brady never received a concrete diagnosis because his case was so rare, even after whole genome sequencing, we were still left without answers.  We are not sure what caused this to happen to our angel baby but we are learning to be at peace with the unknown.

We are putting our love and passion into this foundation in memory of our sweet boy because we know first hand how difficult it is to receive this life altering news and try to keep up with daily life.