Further Testing

Last summer, Mat Keel’s unborn daughter was diagnosed with a rare birth defect called an Omphalocele.

“I can try to do this,” the technician performing the fetal ultrasound tells us a few minutes into the exam, “but the baby really needs to be at least sixteen weeks to get a reliable image.”

“Oh, she is.” “She’s eighteen weeks” we tell him. We’re amused at his confusion, and roll our eyes at each other. This is supposed to mark our last visit to the hospital before working with a midwife.

There is a moment just before everything breaks when you know it will. Nothing in science properly accounts for this.

In the corner of my eye, I notice a shift in our technician’s demeanor. Before it consciously registers, he has quietly called a coworker over to look at the screen.

We ask if we can see a doctor about something else and head upstairs to another waiting room. After a short time, my partner’s phone rings. She steps outside.

I am told the doctor will see us but my partner is still on the phone and I lose my patience. I curtly ask her to hurry up, then huff into the examination room by myself. An instant later, she comes through the door.

“The baby has a hernia in its umbilical cord,” she says.

Just then the doctor appears. I try to explain what we have just learned. And in a flash I realize he is here now because he has already heard this for himself.

“This baby is not OK,” he tells us.

Time and space go cold; my mind stops and then it vibrates. I feel like I’m going blind. I begin feeding the doctor every question I can forage from the sudden, encroaching wilderness of my shock.

My daughter has a birth defect. Her umbilical cord failed to close when it should have, twelve weeks after her conception. Instead, a bit of her liver protrudes into the amniotic sac. Worse still, she is extremely small. Smaller than a cocaine baby.

There are further tests to do. The doctor inserts an extremely long needle into my partner’s belly, extracting saffron yellow fluid. It feels like the oil rig of a pervert.

In the days that follow, my anxiety is like a mountain. Old traumas are revivified and course through me like vodka distilled from lightning. I can’t remember much of it anymore. But I feel all of it;  as if it is being told to me slowly and in fragments which recount the experience of someone else for whom I feel the deepest empathy.

We are assigned to another specialist and see her at least once a week. She is young and German and wears a mala. My mother, a pediatrician assures me she “seems excellent” but her messages are slippery. They change each visit. First the baby is direly sick. A week later she has stabilized. We are raw and open and entirely committed to our child.

On a screen, I watch her open her mouth and shake her tiny raccoon’s paw fists and find myself longing for a Buddhist conception of sin; a way to name the deep sense of moral trespass in deciding her fate. I want to do so firmly and expediently but I need to name and acknowledge this life that may cease, this vim that may go quiet.

We drive ourselves crazy. We become scholars of her condition. There are countless ultrasounds. One afternoon I sit on my porch talking to an intuitive in Pennsylvania named Rhonda, the colleague of a very dear friend. She tells me we don’t have to terminate the pregnancy, that she will be fine -born early with lots of hair. I don’t know.

Another day we opt to have her chromosomes examined by strangers across the country. Her cells grow somewhere in the bowels of Kaiser Permanente on Sunset Boulevard across from the Scientology Center. My blood and my partner’s is extracted too, offered to strangers who will carefully identify clear genetic outcomes, enable us to design the life we want.

By the time my parents divorced, I had already cleared my things from their home. All but a large box of books from my childhood. Since I retrieved them, they sit at the bottom of my closet. One day we scoop two of them into our hands and walk out the door into the scathing August sunshine and down the block to our community garden.

This city was built on a desert. Today it stares right through the ground we had always imagined to be solid. I pull two chairs together in the empty garden, in front of our little plot.

We sit with her in the threadbare daylight.

We introduce ourselves properly and tell her everything that has brought the three of us together in this moment.

We read her the books and we sing to her. We have love, strong and boundless. We know sadness and endless sun. The tears are plain and true.

When the results come in, we get the worst answer possible: everything appears to be in order. Her chromosomes are normal.

At our next visit we learn her anatomy is fine too. But her measurements have dipped into the second percentile.

A few days later the decision gets made in a flash, as if out of nowhere. In the next instant we are packing a bag and asking the neighbors to watch the dogs; checking into a hotel near the hospital. We eat indian food. My partner wakes me before sunrise in debilitating pain. Soon we are outside the ER. Then inside with two young and talkative orderlies. Beneath our eyes, sadness blossoms into deep black circles. Somehow we have remained kind to each other.

The surgery is scheduled for that afternoon. My partner is taken to be prepared. After an hour, I am allowed back to see her. She is in a cap and gown, laying on a stretcher. The doctor is late. We wait.

Soon her water breaks. This is not supposed to happen. I am yelling for someone to help us. They give her morphine. I hold her hands and make her hold my gaze, locking eyes so she will not float away. When the doctor arrives, she is pregnant; her belly seems as big as the room.

I have something to ask her, “can you assure me the baby will feel no pain?” She snaps at me. She is angry at the absurdity of my question. Her words don’t imprint in my memory but they taste like soot. I tell my partner I love her, that I will be there when she gets out. With a small blue bear in her arms, she is wheeled off.

At some point in the next hour, my daughter dies.

I cannot ever explain this; that the decision felt as arbitrary as choosing what to eat for lunch. Sometimes people told us we were doing the right thing. Encouraged us to believe we could know a poor outcome was inevitable. Should see ourselves as agents of mercy. I never bought it.

I still know nothing more than this: my daughter died and her name was Loki. She was named after Avalokiteshvara, the Bodhisattva of compassion. She was born of love and never left it.

I wanted to see her face, to hold her and whisper to her how much I loved her. To sing my complete gratitude she had come to be with us.

I like to think of her as an etheric butterfly who tickles the stomachs of daring lovers and softens calcified hearts with a flap of her luminescent wing. I like to think she dissolved into magic. That she can sail inside of trees and into the hearts of houseflies. That she is surrounded by a pack of sweet, wild dogs who protect her with all the fierceness I cannot from this other world where I reside.

Doctors told me something was wrong; that she was not ok, that she was defective. I said it to myself. I said it to my partner. We traded in this idea everyday. But it was never true. She was fine.

Loki couldn’t stay long but she was as glorious as rain and as perfect as sunlight.

She was perfectly fine.

matttMat Keel meditates everyday.