My son Salvatore was diagnosed with ‘ventriculomegaly’ when I was 19 weeks pregnant. Actually, the neonatologist prepared us for much worse than that, but after being sent down to the Children’s Hospital of Pennsylvania for aLevel 2 ultrasound, MRI and EKG, the resulting diagnosis was ventriculomegaly. My neonatologist, who I admire and respect, ran a few other tests and took me through all of the preparation for an amniocentesis, which I declined at the last moment. I had signed the papers and heard the details about sights that would terminate in later weeks of pregnancy; I was prepped, scanned and ready to go when they asked me to sign one additional paper that said I washaving the test voluntarily. Somewhat innocently, I said I wasn’t having the test ‘voluntarily’ that it was part of the doctor’s choice for diagnosis but that, regardless of the result, thepregnancy would continue and the baby would be born. Amnio cancelled, we all resolved to bring a healthy baby into this world, and we did.
Sal was born on September 30, 2008, one day before his due date after a 24 hour induction process, by emergency cesarean; we weighed 9lbs, 6 oz and was 21 inches. He was sent to the NICU for testing (lots and lots of testing), and there were times that he was in a room with 3 other babies whose combined weight did not match Sal’s. Initially, the neurosurgeon hoped that maybe his ventricles were just large, so Sal was sent home without anysurgery. At 5 weeks, he ran an unexplained fever, resulting in a spinal tap to rule out meningitis. That tap happened to be days before the neurosurgeon appointment, and because fluid had been drained, all swelling appeared to have ceased. Cautiously, the follow up appointment was scheduled for one month later, which is when we were prepared for the surgery that seemed inevitable. The floor fell out from beneath us. The CAT scan was scheduled a week later, and the phone call came in a few hours after that… ‘meet at the hospital on Monday morning, December 22. In the best case, you will be home for Christmas’.
That was Sal’s first and only neurosurgery. We have been very, very lucky. The surgeon is amazing. He is kind,compassionate and genuine. We follow up every 6 months. Sal is the light of our lives. He has delays, his comprehension is behind and heneeds more assistance than other typically developing children, but on the other side of that… he is smart, funny, sweet and loving. He doesn’tknow to tell me when he is hungry or thirsty (although he is getting better at it), but sometimes he squeezes so tightly because he knows how to show his love.
I pray for a cure to hydrocephalus because I don’t want him to live with the fears I have for him and I don’t want him to have the pain and suffering that the hospital stays will bring. I didn’tknow about the foundation until my sister accidentally found out about the walk in Edison on September 8. We will be there. I look forward to meeting you, as well as the otherparents whoshare our journey. Thank you for being champions of this cause.