Janet was four months pregnant when she went in for an ultrasound and learned that her baby had a cyst on the back of her neck.

Two days later, the doctor told her the baby also had a cleft lip and palate, a clubbed foot and a rare neural tube defect. The doctor explained that babies with the defect had a high mortality rate. The little girl would most likely not survive—and if she did, she would have major motor function problems. Janet was faced with the question of whether to have a medical abortion. She decided to keep the baby; she had felt her kicking; she had already fallen in love with her.

The knowledge that the child would more than likely die put Janet’s marriage under great strain. When she was seven months pregnant, Janet developed a massive deep-vein thrombosis blood clot in her leg, requiring twice-daily blood-thinning shots.

The doctors watched her carefully to make sure she did not go into labor while she was on blood thinners—labor could be life-threatening because of loss of blood. She had a scheduled C-section on March 25, 2010. She and her husband named the baby Ava Marie.

Ava had two brain surgeries in her first two weeks. She was on a ventilator the entire time; everything seemed to be going wrong. Her lungs kept collapsing, and she developed kidney problems. Janet spent each day at the hospital; some days, it was painful to go home.

She and her husband finally decided to take Ava off the ventilator and let her go. The doctors unhooked Ava from the ventilator and handed her to Janet. She died in Janet’s arms.

Janet says her world came crashing down that day. The strain on her marriage intensified. She and her husband divorced six months later.

“I don’t regret anything at all,” Janet says. “I would go through it all again—even if I only got to see her again for five minutes.”

I cannot begin to imagine the pain that Janet has gone through. This spring, Janet released balloons into the sky for Ava. I wanted to give her a picture that she could keep in memory. I know it’s not a lot, but I wanted to give her something.

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