“I know it’s not going to last”

Less than two years ago, Jennifer Allison, pregnant with her fourth child, slipped away from a busy day as an Anchorage maternal health nurse for a routine 20-week ultrasound. In the dark exam room, a tech slid the transducer over her belly. A black-and-white image of the baby’s chest cavity appeared.

Allison had seen hundreds of babies on hundreds of ultrasounds, but she had never seen a heart that looked like her daughter's. There were three chambers: a smaller one on the top and one on either side. The shape made her think of a snow angel.

"When the heart beat, it looked like the wings were opening and closing," she said.

The ultrasound tech got quiet and left the room. The lead radiologist came in. Cool panic rushed through her. Allison knew this story. She'd been with patients going through the same thing.

"I said, 'Is it compatible with life?' " she said. "He said, 'I don't know.' "

Her daughter was diagnosed with Right Atrial Isomerism Heterotaxy, a profound birth defect. Normally, the right and left sides of a developing fetus look different, but her baby's were the same. The syndrome causes malformed and dysfunctional organs and is often fatal. Only one in every five children with the syndrome survives the first year. The list of possible problems is almost limitless.

[Photo gallery: Carrying Sky]

Allison called work and cleared her schedule. She called her husband, Aaron, a paramedic with the Anchorage Fire Department. They talked with their midwife and a perinatologist. Terminating the pregnancy was an option, but Allison couldn't get there. She decided she wanted to carry her daughter as long as she could. They decided to name the baby Sky.

"I really believed that I was going to stay pregnant and give birth to a dead baby," she said.

There was no decorating a nursery. No tiny clothes. People who knew what was happening couldn't look at her belly, she said. Sky kept growing. At 38 weeks, doctors induced Allison at a hospital in Oregon. Sky came out alive, pink and crying.

An examination showed that her anatomy was malformed, but her brain was intact. Beneath the tubes and monitors, she seemed in moments just like any other newborn, downy hair and dark eyes that followed the sound of her mother's voice. She would need scores of surgeries on her heart, lungs, digestive tract, among other things. It was unlikely she would live a year, doctors said.

And, yet, somehow she has lived.

Sky celebrated her first birthday May 25.

The last 12 months have been the hardest thing Allison has ever lived through. Time blurs with hospital visits, surgeries and emergency rooms. Allison's perspective on medical intervention has changed. Less is more.

"We're holding her down because we say we're doing this for her. I'll look into her eyes and I'll just see her confusion and her fear and her panic," she said. "In a second, in a breath, it crosses over, no no no no, we're doing this to her. We need to stop. I don't care what the consequences are."

So many times it has seemed when Sky is sick that she might not recover. Her heart has stopped. She's at risk of stroke. If she takes a tumble as she learns to walk and begins to bleed, she won't clot normally. If she hits her head, her brain could hemorrhage.

"I call them the monsters that hide under her bed, all these things that can happen," Allison said.

But the days pass. Sky babbles words. She smiles and laughs with her siblings. On a recent afternoon, she nursed in her mother's arms in the coffee shop, her chubby hand brushing the skin on Allison's chest.

"I can't stop it. I can't fix it. But, I can bring her joy, I can love her. I can do the things for her that make her happy," Allison said. "The best I can do is just carry her through it as far as she wants to go. When I feel like Sky is done, I'm going to let her go. I'm not going to hold on to her. That brings me so much peace."

Ash Adams is an Anchorage-based photographer. Find her work at ashadamsphoto.com.

Julia O’Malley is an Anchorage-based writer. Find her work at juliaomalley.media.