Keith was born on August 25 at 39 weeks. He weighed 5 lbs, 13 ounces.
As soon as he was born, he was taken to the NICU because he was not breathing on his own. On day three, he was breathing better but they told us something was wrong with his heart. We found out he had a murmur and Pulmonary Stenosis. They referred us to a Cardiologist and we were released after a week. Keith could not feed. He gagged on the bottle, and the formula just ran down his mouth. Keith never slept and screamed if we laid him down. He had to be constantly rocked and was only calm if his body was straight up and down. So, I spent many nights sleeping in the rocking chair.
Sleep is probably an overstatement. There was not much sleep the first two years.
Keith screamed constantly. There were many ER visits and visits to the Pediatrician. They all told us it was just colic. At the age of twelve months, our Pediatrician said he was officially “delayed” and recommended physical therapy (PT), occupational therapy (OT), and speech therapy. I was absolutely shocked. During those twelve months, I think I had been living in denial as I came up with every excuse why he was missing milestones.
Once I accepted his “delays”, I was on a mission to find out why he wasn’t talking, rolling over, eating or crawling. We took him to a Developmental Pediatrician who could not come to a conclusion, but referred us to a Geneticist when he was 16 months. Within a few minutes, the Geneticist said she highly suspected Keith to have Williams Syndrome. When she brought us information on Williams Syndrome (WS) and showed us pictures of other kids with Williams Syndrome, I knew immediately Keith would be diagnosed with it too.
Of course the FISH test came back positive, and I was glad to finally get a diagnosis so at least I knew what the future would hold.
I joined groups and talked to other parents but still felt like we didn’t fit in. Keith was so much more delayed than the other kids. I knew there were variations with WS, but Keith just did not fit the mold. I still knew something else was going on. At age three, we took him to see a physician that specializes in Williams Syndrome and she confirmed that Keith was also on the Autism Spectrum. That was my fear. We also discovered Keith had high blood pressure and unbelievable bouts of anxiety. He was hitting himself in the face and screamed non-stop – again. We got his blood pressure regulated with medication and also put him on anxiety medication.
Last year when Keith turned eight, I took him to Wisconsin to see a Williams Syndrome specialist again, and as I suspected, was diagnosed with full-blown Autism, rather than Autism Spectrum. Only 8% of children with Williams Syndrome are on the Autism Spectrum and even fewer develop full Autism. This explained why Keith is unable to talk in sentences, has poor eye contact and is fixated more than most. With our biggest battles being anxiety and blood pressure, Keith is on three different blood pressure medications and three medication for his Reflux and Gastroparesis.
It’s been a long road, but I do thank God every day that he does not have the heart issues that many of the Williams Syndrome kids do. Developmentally, Keith is about age three, and still does not have reciprocal conversational skills. We are not sure if he ever will.
Keith is in the 3rd grade and is in a special needs classroom. He loves school and loves all of his school friends. We do have hope that he will continue to make developmental progress and that we can continue to manage his medical issues.