January 21, 1993
Dr. Chaparro has just stepped into the room. Again, it is early morning. It is starting to seem like everything either happens very early or very late in the day so that rest is always far away and not enough. Heather is still being pumped full of magnesium sulfate and the contractions seem to be under control. As the doctor takes a seat next to my wife’s bed, I remember back to when we had first met him.
My wife and I had already ran the gamut of genetic specialists for first, second, and even third opinions looking for hope. They had all confirmed the results and prognosis of the ultra sound and so it was with no enthusiasm that we kept the appointment that had been made for us with a neurosurgeon at the Childrens hospital in Dayton, Ohio. We had already been told that in vitro surgery was not an option for our child. Technology just wasn’t far enough along for the delicate procedure that would be necessary to make any difference in our situation. So why were we here? Maybe somewhere deeply veiled by all the pain and despair, a small spark of hope was waiting to be fanned.
As we walked into his office that morning, we didn’t see what we had expected. Dr. Chapparo was a young man, maybe early 30’s, dressed in a shirt that contained bright purple colors and around his neck was a bolo tie. He bounced out of his seat and introduced himself as he ushered us to chairs on the other side of his desk. Once he returned to his chair he seemed to continue to bounce as he wiggled back and forth in his seat. This guy had a lot of energy. My wife and I shared a quizzical look as we both tried to figure out what it was we were supposed to be getting from this hack.
He immediately fell into doctor speak as he regurgitated all of the same fancy medical terms we had heard a dozen times since December 23rd.
“Myelomeningocele…. yada yada yada… hydrocephalus…. more yadas. Microcephalic…. shunts…”
The messenger may have been different, but the message seemed to be moving along the same lines that we now knew by rote. But, then Dr. Chapparo said something that caught our attention.
“Science is great but it doesn’t know everything. I think we should wait and see what happens.”
Was that hope? Had he really seen the same things that everyone else had when they held the images up against the x-ray lights? Was he just as a crazy as he appeared to be as he sat there and bounced in his chair?
Thinking back to that meeting, it was easy to see a change had occurred in how my wife viewed the pregnancy. She had stopped talking to the baby in her belly after we had been given the news following the ultra sound. We no longer had late night discussions about what to name our future child or how to finish decorating the nursery. In short, the spark had gone out of her where the baby was concerned. But after that meeting with Dr. Chapparo, some of the spark had returned – it was very guarded – but it was there none-the-less.
And here he was for our second meeting with him. This time he had come to see us in our ‘office’ though neither of us was doing any bouncing.
“How you guys holding up?”
How do you answer a question like that in the middle of the situation that we found ourselves?
“Uh, ok, I guess.”
“I hear it has been an exciting couple of days but you guys are in the best hands. I stopped by because I wanted to let you know that we have a team prepared to respond as soon as anything changes. You guys have opted for the C-section, right?”
We answered, yes, that was the case.
“That’s important. We will need to keep the baby’s back as sterile as possible until we can close it up. Once you deliver, we will transport your child to Childrens where we can treat the opening in her back and take pressure off her ventricles by draining the excess fluid that is building in her head. Have you decided on a name for you daughter?”
My wife answered that question, “We chose the name Lauren Alexis.” I followed quickly on her answer, “But we are going to call her Alex.” We had decided on that combination before we even knew what sex the baby was going to be.
“OK, then the next time I see you all, we will be taking care of Alex.”
And with that, Dr. Chapparo was standing up and heading towards the door. My farewell followed him out, “I hope its not too soon, doc.”
That was the beginning of day 3 in the hospital. I still hadn’t left to get a shower or change out of my work clothes since we had shown up on Tuesday, so Heather’s mother was going to stop by and give me a break to take care of that and to get some things from home for my wife. Thursday was a day to settle down and wonder how long a haul we were in for. The longer that our daughter stayed in my wife’s womb, the more time her body would mature and be able to survive outside of my wife’s uterus. However, each day that passed was also more time for the Hydrocephalus to continue to destroy brain function. Were we supposed to hope for a premature birth that would put her on a path to treatment for her medical condition but could most likely kill her because her body was too frail? Or were we supposed to hope she remained where she was while her medical condition robbed us even more of the chance of having a child with some mental function but increased her odds of physically surviving?
18 years ago on January 21st we had officially entered some strange form of limbo. It was only apropos that one of the things that I would bring back with me from home was a book that I borrowed from my brother by an author that I had never read before. I opened the pages of The Stand by Stephen King that evening in the hospital. I don’t know why I figure you would care about that detail but that is one of the things that I remember from that day long ago.