In utero stroke survivor { Giving Tuesday winner! }

“Desmond, our rainbow baby, was born in November 2015. After birth he had a 5 day NICU stay that I had to beg for, which would be the beginning of what would be a life long journey for us all- especially Dez.

 

We started to notice small things, like at about four months he was favoring his right side. He would also always look to one side, which we chalked up to infant torticollis, and thought it would pass. Little did we know he is actually blind on the left side of both of his eyes, which is known as left homonymous hemianopsia.

 

He would constantly have his left hand fisted and toes curled. The right hand would constantly be the one to do everything for him. Keep in mind we were like brand new parents all over again, so we just thought we would watch it and bring it up at his next visit. We discussed this with our pediatrician, who agreed with us that we needed to keep a close eye on things.

By eight months, he was still not able to sit up alone. This was when things started to change. We got referred to an amazing physical therapist, who helped us work with him in ways to build strength. This was just the beginning, In September 2016, we met with a huge team of medical personnel who told us they too thought something was going on. However, they only felt comfortable diagnosing him with left hemiparesis, or left-sided weakness. They told us the neurologist would be the one who can properly diagnose us so we would need to wait, but in the meantime needed to see an occupational therapist.

 

In October 2016, we met with the neurologist. He told us that Dez has spastic hemiplegic cerebral palsy, most likely from an in utero stroke. He ordered an MRI for a later date and said that he was confident in his assumptions and the MRI would only confirm it, and nothing in his treatment plan would change. We agreed to wait until he was a little bit older.

 

July 24, 2017 was the day things were put into perspective for us. This is the day our fears were confirmed, our sweet baby had suffered a massive in utero stroke. We knew deep down something wasn’t right and were somewhat prepared, but it didn’t truly sink in until we saw the MRI results. Once this was confirmed, it was our mission to go even harder to help him fight this. We were told that he may not walk, talk, or even function normally, but we knew that he was a fighter and would prove us all wrong. If you look at him you would never even know the battles he has already faced and will continue to face. To this day he shows us just how amazing he is!

Desmond has left side hemiparesis, spastic CP, homonymous hemianopsia, cortical visual impairment, and many other extensive diagnosis as well due to his in utero stroke. Many times when we go to appointments (where he is a new patient) the staff always tell us they expect to see someone in a wheelchair, not Desmond. Because looking at his chart and seeing his images, you would never begin to imagine that he looks like any other kiddo.

 

He has been the most amazing little miracle and shows us just how strong, brave, and amazing he is. He truly is a warrior!”