Jade and Alexis our stroke story

My name is Jade and my baby girl Alexis had a stroke in Utero. A short time after she was born Alexis starting having seizures at our local Hospital and was rushed to a major children's Hosptial. 

Within an hour we were told she had a massive stroke and she would never walk, never talk and never live an independent life - my heart broke. My helpless brand new baby was hooked up to every machine you could think of as we sat and watched and thought about what her future would be like.

I still can't understand how a baby who wasn't even born yet could have a stroke, I had never heard of stroke in Utero before. 

The pain, heart ache and tears are something I still cannot put into words, but day by day my baby Alexis got better and better. After only ten days in NICU we were sent home with a baby who we thought would never live an independent life.

We were told to wait for appointments as the children's Hosptial had sent of referral letters for our local public hospital to take over her care. We waited for three weeks and nothing happened. We were scared, emotionally and didn't know what to do, I had this baby I needed to take care of but felt very alone and unsupported. 

At six weeks I still had heard nothing so I started calling around to hospitals to find out who we needed to see, and where our appointments were, but no one knew what we were talking about. The children's Hospital were certain they had sent off the referral letters, but it appears they had gotten lost in transit.

I spent the next three weeks on the phone literally begging Hospitals to see us, to help us, to tell me what to do. I was left alone with no one to help me until the major children’s Hospital took us back, finally after nine weeks we had a Stroke Nurse Coordinator who helped us. 

Alexis is now twenty months old and I am still on the phone constantly advocating for my child to get her the help she needs. We saw the Stroke Team a few weeks ago, they can’t believe how well Alexis has recovered, they have no idea how or why she can do what she can do. 

The neurologists look at her scans and stand by what they said at the hospital, but for some reason my miracle baby can walk and talk, and is very intelligent.

She is classed as having extremely mild Cerebral Palsy (CP) and there are a few small issues we’re working on, but if you didn't know she had CP you wouldn’t be able to tell. 

The most important thing is she will live an independent life. I want to share our story to highlight the importance of follow up care once patients are discharged from hospital. I am also just so proud of how hard my baby has worked - we are stroke survivors!