Tuesday, July 28, 1998

Hope, Online
by Rick Aristotle Munarriz
([email protected])

I did not want to expand my vocabulary that blistering afternoon. On July 2, 1998, my wife and I were nervously anxious about the birth of our second son, due the following week. Beyond having to deal with the sweltering heat, she had been having a great pregnancy and all previous tests had shown the baby to be perfectly healthy. It was a routine sonogram. It was not a routine sonogram result.

In a surreal euphoria-stripping turn of events the radiologist ushered us into his office to explain that it appeared as if our unborn son had hydrocephalus. The brain ventricles were not draining the cerebrospinal fluid fast enough. Water in the head: a cute Greek translation for a very ugly affliction.

Naturally the best plan was to induce labor, not only to examine the baby as soon as possible, but also to prevent the optic nerve and brain tissue damage that the fluid build-up could cause. But it was late Thursday, the day before the Independence Day holiday, and the hospital was running on a skeleton crew all weekend.

We arrived back home in shambles. As our neighbors soaked up the long weekend with cookouts and water sports we had to cope with mental fireworks of our own. We had so many questions and there was no one available to provide us with answers. All we wanted was facts and hope, and not necessarily in that order. We were alone -- almost.

Almost alone because we had the Internet. A few clicks into a search engine later we were reading the hydrocephalus work being performed by major medical universities and the vast educational outreach efforts from devoted charities. Not everything we read was pleasant but it was there at a time when we were desperate sponges. We found facts online. We found hope, online.

By the time Monday morning rolled around and Kevin Armando Munarriz entered the world we were a little less worried and a lot less ignorant of his condition. We were able to discuss intelligently the situation and the options available with our neurologist and neonatalogist. No future is easy. Thankfully Kevin has not yet developed any of the other maladies often associated with hydrocephalus. A week after he was born he had a ventricular shunt inserted to regulate the fluid flow caused by his aqueductal stenosis. As sad as it is to consider that they make hospital gowns that small, we are now excited over the prospect that, beyond a few surgical revisions and MRI's over the course of his life, he should lead a normal life.

I love today. I am head over heels infatuated with tomorrow. I think back to how that long weekend would have played out if it had been our first son, just five years earlier. We would have raced to a shuttered library in a failed research attempt. Instead of finding support with online families who had gone through the same thing we would have been home, alone, with the stench of charred burgers and the painstaking laughter of poolside children filling the air. My gratitude to the Internet has always been strong. It has educated me. It has employed me. And, for that one never-ending weekend, it gave me things which I probably would have only found kneeling pewside -- faith, hope, and an incredible zeal for charity.

Have a similar tale?
Talk about it in the Fribble Message Folder!