Precarious and Precious

It was 11 years ago today that my husband and I lost our daughter, Megan. She was born at a tiny 3 lbs, 3 ozs and lived only 10 days. This year has been particularly emotional given the other losses we have faced just in the past few months. Following is an essay I wrote about a small part of our short journey with Megan.

At the foot of my bed is an oak-colored cedar chest for my daughter. We found it at a very large furniture store in a very small town, and it was perfect. It featured a sunrise carved in the front, which looked more like a pineapple. Smaller than normal, it stored all my daughter's mostly pink things so nicely – her baptismal gown, her birth certificate and imprint of her feet, her baby blankets and several of her baby outfits as well as her baby book — an empty baby book.

Not that I couldn’t have filled out some of it. I just couldn’t stand the thought of not filling out the whole thing and having all those blank pages stare back at me, a painful reminder of what we didn’t have and what she never got to do.

It wasn’t supposed to be this way. As we sped through Lincoln like we were racing in Daytona, I couldn’t stop my mind from racing. The ob/gyn appointment in Grand Island had us running late and that was just the beginning of the horrible turn of events.

Just a month earlier, my husband bought a dark blue minivan for our expanding family; a minivan, a blinking neon billboard that might as well read “family hauler.” At the time though, we had no idea that instead of two children, we would be hauling my husband, sister, and me, with my uncomfortably bulging belly. Uncomfortable was an understatement. Under my blue maternity top, the skin stretched across my pale beachball-sized abdomen so tightly that you could bounce a quarter off it. All that pressure wreaked havoc on my spinal column and every nerve in it felt pinched. I hadn’t been able to sleep much in the last 2 months, not only because of the pain, but my imagination running wild kept me awake as well. Mid-day in the June heat and humidity of Nebraska did not help either.

Desperate to speak with my former doctor, I spent most of the drive trying to figure out how to send him an email from my cellphone. He had taken care of me with my first pregnancy and delivered a healthy baby boy just two years earlier. I had stayed in contact with him when I found out we were expecting again, another miracle pregnancy despite all my fertility issues. Shortly after my son’s birth though, my doctor moved to Oregon, and I was forced to choose a new doctor.

Negative thoughts kept running through my mind, playing repeatedly like a broken record, compliments of that new doctor, a young blonde with not much experience I would soon learn.

“Oh, that’s way too much fluid,” she said just the day before, looking at the monitor while running the ultrasound probe over my belly glistening with a cold blue gel.

What does that mean, too much fluid? I wondered.

She called me at home later that day to tell me I was having a baby with a chromosome abnormality, something along the lines of Down’s Syndrome. My husband was furious she gave me that news, not only over the phone but when I was home by myself. I had suspected something was wrong through most of the pregnancy. No one believed me. It’s a maddening feeling, like when you are dreaming and trying to scream, but nothing comes out.

So now we were on our way to an ultrasound specialist in Omaha, twisting and turning along the interstate at 80 miles an hour, all the while keeping an eye open for our exit. I’m not going to lie, I grabbed the ‘oh crap’ handle more than once. I would have given anything to trade places with some of these people that were passing us like we were standing still. I’m sure they were all going somewhere that was better than where I was going, maybe the zoo or even shopping at the mall. Neither me, nor my husband knew how to get where we were going. Fortunately, my sister had been to the University of Nebraska Medical Center several times for infertility treatments and knew the way.

The closer we got, the more I felt like throwing up and it wasn’t just because of the pregnancy. I’ve always been a nervous person with OCD — and not in a productive “I have a super clean house” kind of way — but the useless kind that just makes me neurotic.

Once there, like a weeble-wobble, I waddled toward a help desk, explaining who I was and why I was late. I didn’t even know if we would still have the appointment or if it had to be rescheduled. Specialists are funny like that, but they got us in and led us through a maze of winding corridors, and even though they were pleasantly decorated with artwork, I couldn’t have found my way out even if I had wanted to. Apparently, we had come to the wrong building, and they took us through a back way labyrinth. My legs felt like Jell-O and between that and the extra pressure on my back from the excess fluid around my tiny baby, I really could have used a wheelchair though no one offered.

They took us to a tiny room, more like an oversized closet, dimly lit with canned lights in the ceiling. I laid on the exam table while the technician turned off the lights above me for the procedure. It didn’t take long as she rolled the wand over my belly, and I heard clicking as she saved multiple images. The technician said nothing, only that the doctor would be in shortly.

I stared at the doorknob, waiting for it to turn. The lights above me were still dimmed, but my husband and sister were each illuminated by small lights above their chairs as they sat next to each other. I was glad because they couldn’t see me sniffling or wiping tears with the back of my hand, or at least that’s what I told myself.

It was so quiet. I sat on the edge of the thin-padded table, swinging my feet back and forth like a pendulum. My sister bounced her knee nervously over her leg. My husband, who would normally be chewing his fingernails down to nubs, stared blankly in a daze. We kept waiting.

“Does anyone else have a sense of impending doom?” I said, just to break the silence.

Finally, the doorknob turned, and my heart skipped a beat. The doctor came in and introduced himself, then told us the news as he brought up the ultrasounds on a bright white display, big enough for all of us to see. He didn’t mince words and in fact, appeared to stiffen himself in his white doctor’s coat with his perfectly trimmed dark hair, not an emotion on his face. I started to cry in a sort of a whimper, Todd started to cry in a way I had never seen a man cry before. His eyes swelled with tears and turned red; his bottom lip began to quiver. He couldn’t speak clearly. It was a bit unnerving seeing a normally burly and solid man be reduced to that. My sister cried too, her shoulders rose and fell in short bursts that matched her sobs.

I began to ask questions.

“I’ll get to that. Just let me finish,” Dr. Stiff said, matter-of-factly.

He pointed out the things that were wrong with the baby, who we would name Megan, which were much clearer on the 3-D ultrasound then they were back in March. That was when the first ultrasound specialist said he was 98 percent sure everything was fine — 98 percent.

We were blindsided. Thirty-five weeks and four days of what we were told was a normal pregnancy had come down to these few minutes with a doctor who had all the sensitivity of a bug.

“The physical abnormalities can be fixed,” he said. “The club foot, the clenched fists and the defective heart, which you can see only has two chambers. However, she would need to be stronger to endure the heart surgery. But if she gains weight, her heart will have to work much harder, and she might not survive.”

They admitted me to the hospital from there, once again along the winding back corridors, and scheduled an amniocentesis to find out exactly what genetic abnormality she had. It was Trisomy 18, also known as Edward's Syndrome, a step worse than Down's Syndrome. We were all a mess of tears and tissues and sobbing — an inconsolable, uncontrollable sobbing.

It would be 10 days before my daughter succumbed to the damage done to her body practically before she existed, a hairline fracture in her DNA when her 23 chromosomes were formed. There was nothing I did or could have done differently to keep any of this from happening, I know this. No amount of bed rest or extra sleep, healthier eating or exercise would have changed the outcome. Had we opted to do something to extend her life — which in hindsight, had I known she was such a fighter I would have — we may have had more than 10 days.

I wish I would have.