Where It All Began (part 2)

A week later– an eternity for a worried parent– Chris and I were headed down the Henry Hudson Parkway to Columbia University Medical Center for a fetal MRI. Oh, now there is a story! Remind me to tell you about that one. For the sake of expediency, let’s fast forward a few weeks.

Due to a less than positive experience with some doctors at Colombia in addition to the arduous commute to the city multiple times a week for high-risk OB appointments and ultrasounds, we made the decision to switch our care to Westchester Medical Center. I continued seeing my new doctor twice weekly to receive care and measurements of the baby’s brain via ultrasound. I dared not go alone in fear that I would hear more bad news. This meant that both Chris and I missed a lot of work. I cringed at each missed day, because that meant I would have less time to be home with the baby after she was born– we need paid maternity leave please!! Sorry, let me jump off this soapbox.

This particular day happened to be Halloween, and we were scheduled for a tour of the Neonatal Intensive Care Unit (NICU) at Maria Fareri Children’s Hospital following my OB appointment in anticipation of the baby needing specialized care, many labs and tests, as well as possible brain surgery. Before meeting one of the neonatologists, we were brought into one wing to see the handwashing station, the donation milk refrigerator, the pumping rooms, and finally, one of the NICU rooms filled with incubators and clear plastic bassinets. There was a sense of business as the nurses went about their duties caring for each baby, yet it was layered upon an eerie sense of quiet. I could hear the rhythmic whirring of machines breaking through the silence. As I peeked around the room, I saw two rows of incubators, some adorned with handmade blankets, pictures of parents, and prayers of strength. The incubator directly to my left caught my eye. Taped to the outside was a little blue piece of paper that read, “Baby Boy, born October 20, 1.5 lbs”. Inside I saw one of the world’s strongest fighters wrapped in a tiny little body.

Moments later we sat across from Dr. V, a neonatologist, in her office. She was a kind, soft spoken woman with just a hint of an accent. Her warm smile eased my anxious mind. I watched as she scanned through the baby’s MRI report, furrow in her brow.

“Your doctor told you that there was a dilated ventricle, yes?”

“Yes.”

“I see. There seems to be more going on here,” she continued. If it was just extra fluid in the ventricle, it could be corrected surgically with a shunt, but I am actually seeing that your baby is missing brain tissue.”

I stared numbly, breath catching in my chest.

“The baby seems to be missing portions of her brain. It is possible that it just never developed, or that she had a stroke and that part of the brain tissue died.”

She continued her explanation drawing a diagram of the brain on a yellow legal pad. She explained that the portion of the brain that was missing is called the Corpus Callosum and it is responsible for communication between the two hemispheres of the brain. It impacts cognitive function, speech, and motor planning.

The essence of what she revealed that day was that the baby’s brain condition was much more severe than we had originally thought, and we should be prepared for the possibility of significant impairment.

That night, I dressed up as Mike Wazowski from Monster’s Inc, rocking my 37 week belly, dressed up my older daughter, Mila, as a monster and took her out to celebrate Halloween.

We laughed at her cute little costume, took lots of pictures, and then settled her in for sleep. I trekked quietly up the stairs to my room, stripped out of the costume and into a baggy t-shirt and sweats. Then I curled up under my blankets and cried for several hours.

Every now and then I would drift off to sleep only to be awoken by repetitive gnawing thoughts:

Is my daughter going to walk?

Will she talk?

Will my daughter be able to tell me she loves me?

Will she ever get married or have her own children?

Is my baby going to die?