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.”

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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.

January 20, 1993

It’s Wednesday morning.  I am not sure what time since time has lost meaning inside the dimly-lit, drab walls of the hospital room.

Heather, my wife, had been hurriedly admitted to an intensive care unit within the labor and delivery ward yesterday morning and had been under constant care all that day and well into the morning.  It took that long for the medications to take their course and stop the labor from progressing.  That struggle had come at the cost of my wife suffering the worst case of nausea that she had ever experienced – not to mention the back pains that were actually signs of the contractions that her body was initiating as it tried to force our 24-week fetus into a world that it was not prepared for.

This morning we were reminded just how unprepared our unborn child is for this world by a visit from a doctor who specializes in premature births.  The baby that is impatiently trying to escape my wife’s womb is somewhere between 1 and 2 lbs.  She is about half the length of a full term baby and she has yet to build the fatty layer below the derma that will give her the warm pink tone that she would have if she were to be the full 40 weeks of gestation.  The biggest concern though is that her lungs are not fully developed.  She will not be able to breathe on her own if she comes today.  We are given an option to be part of a clinical study in which they would inject my wife with surfactant made from calve lungs and other steroids that would increase the odds of our daughter surviving if she were to come today.  We had agreed to the study and my wife had been given the additional medicines.

But these were measures to deal with the possibility of a premature birth not the birth of a child with myelomeningocele dysplasia (severe form of spina bifida).  Our daughter’s spinal column was open to the amniotic fluid that she was surrounded by within the sterile environment of the amniotic sac.  My wife had lost the mucus plug that keeps the cervix sealed during pregnancy and the bag that was the only defense against an infection that could kill our daughter was already beginning to ‘fall’ outside the uterus through the open cervix.  The doctors had made it clear that natural birth would be a death sentence for a fetus that was facing such a premature birth with these medical considerations.  If my wife progressed any further with her labor, she would have to be rushed to the OR for an emergency C-section.

We are still waiting on a visit from a neurosurgeon who is a specialist at the Childrens Hospital that is about 30 minutes down the road.  We are anxious for this visit because he will have to perform surgery on our daughter the day that she is born to close the opening on her back and to treat the hydrocephalus if she is to survive beyond her first day of life.

We haven’t slept or ate.  My wife has spent the night vomiting and I spent the night catching it in a pan.  I am still in the work clothes that I had meant to wear to work the day before. All of this information is coming at us so fast and we are making decisions that we don’t fully understand.

Can I share something with you?

I am scared. I don’t know what is going to happen or how things are going to turn out.  I don’t know if our baby is going to make it.  I don’t know how all of this is going to impact our young marriage.  I don’t know how we will financially make it.

Everything is outside of my control.  Everything just seems to be happening to us.

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As I am trying to recall the events from 18 years ago, I am trying keep a balance of detail and length of post so that I can bring some understanding of what my wife and I faced without completely boring the reader.  January 20th was a day of discovering how big the hill was that we faced in trying to give our daughter the best chance at living.  Every time we turned around it seemed we would get more bad news.  My wife would have contractions from time-to-time during that day and each time we would brace for ‘is-this-it?’  Her nausea would continue but would stabilize so that she wasn’t so sick by the end of the day.

I will continue with this series tomorrow.