Our story begins with a baby boy born on June 28th 2003. He was 8lbs 2oz and arrived by C-section due to failure to progress. Jameson was a big boy and came into this world with a subarachnoid hemorrhage, GERD, apnea, and a VSD murmur. It was explained to me that the hemorrhage was a brain bleed that had nothing to do with the brain, but the blood vessels between the scalp and skull that burst and that they would heal and be fine. We are still waiting on normal. Jameson was referred to the Babies Can’t Wait Program, I had no idea what this was and why we needed it, because I was told once the bruising went away he would be normal. Jameson literally slept for the first four months of his life, the only thing we had to do was feed him and change his diaper.
Jameson came home with an apnea monitor though it only alarmed us once in two months. At Jameson’s two-month check up, the pediatrician asked if he was tracking with his eyes or reaching for toys. I told her the only thing he did was sleep. I was given the information for Babies Can’t Wait program, I asked what the program entailed and was finally told that the brain bleed could leave him with CP, with that we started paperwork for much needed therapy. When Jameson was about 4 months old he woke up a bit and was a happy baby. He only cried when something was put on his head and to this day he still hates hats. We remained in the Babies Can’t Wait Program until age 3. During this time, Jameson was diagnosed with asthma. By 12 months he was babbling, however he had few words. I asked the pediatrician if she thought he might have autism, she replied, “let’s wait and see.”
After talking with our Babies Can’t Wait service coordinator, I knew we had to find services for Jameson because Babies Can’t Wait stops providing services at age 3. We ended up at the Marcus Center in Atlanta, the developmental pediatrician there gave us the autism diagnosis along with PDD-NOS. She felt there was more so she sent us to genetic testing at Emory University, there we got the PTEN Hamartoma Tumor Syndrome diagnosis. Our son has Cowden Syndrome, BRRS, and Proteus Syndrome. Cowden Syndrome involves multiple organ systems therefor we have an array of specialists we see yearly. We are always looking for information and studying to make sure we have everything covered and are open to suggestions and advice.
Thank you for sharing our story.