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Grief, Gratitude and Baby Lee

'Can I do this?' his mother agonized, knowing one of her newborns would not live. But for 43 hours, he was hers to cherish.

January 28, 2006|Stephanie Simon | Times Staff Writer

WICHITA, Kan. — She wanted to honor her son, to celebrate his life, however short. That's why she had refused an abortion, even after doctors told her that her little boy would be born without a brain.

Now he was here, squirming in his blankets, and Danielle Hayworth could not bring herself to hold him.

Her hospital room was packed with relatives cooing at her son's sweet face, telling her to enjoy every minute she had with him.

Danielle turned away from the bassinet. This was all she had dared pray for: a few moments to hug her son close, to memorize his sounds, his smell, how his thin fingers felt clasped around her own. But all she could think about was losing him, and how her heart would break.

She could not bear the waiting. She wept, and wished for it to end.

"Is that bad of me?"

*

Danielle found out she was pregnant in May when she dragged herself to the emergency room, weak from days of vomiting. The news left her stunned and scared.

Her two marriages had ended in divorce, and Danielle, 30, was raising her two boys alone. Her boyfriend, Lee Crump, was excited about becoming a father for the first time, and he was able to offer some financial support; he had a decent job pouring cement. But Danielle didn't trust any man to stick around once the responsibilities of parenting caught up to him.

She wasn't sure she was ready for more responsibility herself. A high-school dropout, she had earned an equivalency degree, but worked mostly in temporary clerical jobs. She got health insurance from the state; federal housing vouchers; disability checks for her 9-year-old, Jonathan Price, who has cerebral palsy. Still, there was never enough money.

Her bungalow, across the street from a lumberyard, was sparsely furnished: a ripped couch, a TV, a shelf of children's books. The scuffed walls of the living room were bare except for a few framed portraits of her boys. Danielle didn't have a bed for her 3-year-old, Dashon Starr; he had to share with her. A baby would need a crib, a car seat.... She lay awake nights.

In early June, a sonogram picked up two heartbeats: twins. Danielle felt sick.

Two weeks later, another scan detected five cysts, possible signs of a birth defect, in Baby A's gestational sac. Danielle thought of abortion, but only briefly; she knew she couldn't, because of Jonathan.

Her son had suffered an unexplained cerebral hemorrhage in the womb at the start of her third trimester. Warning of severe brain damage, Danielle's doctors recommended abortion. But Danielle had recently started going to church; firm in her newfound faith, she decided to leave the baby in God's hands.

Jonathan suffers frequent seizures and can't always control his hands. He's prone to outbursts so violent that Danielle once called police to subdue him.

But he also can be gentle, and protective of his momma. He told her that he wanted to get a job at Taco Bell so he could buy her a car that wouldn't break down. When she sits on the couch, he kneels next to her and rests his head in her lap. He cuddles with her, rapt as she reads him "Thomas the Tank Engine."

He makes her smile, too. Like the day he climbed off the school bus and, with a swagger, announced: "I need some breath spray so I can smell good for the ladies."

His brother Dashon is a happy-go-lucky kid who tears through the house wearing nothing but saggy shorts and an enormous grin. Danielle calls him her little stinky and smiles every time she talks about him: "He makes me feel like I've done something right."

When she was 16, Danielle aborted a pregnancy at her father's insistence, she said. She has made peace with that now. But when she thought of Jonathan, when she felt the bump of her stomach, she knew she could not abort the twins. Nor would she consider adoption.

"I couldn't give up my babies. I couldn't," she said. "They're my kids. I'm going to take care of them."

She and Lee, 32, picked out their names: Baby A, the boy, would be Lee Jr. Baby B, the girl, would be Leah.

It was five weeks before another ultrasound, in late July, clarified the problem with Lee. In the first weeks of embryonic development, the neural tube that forms the brain and spinal column had failed to seal, a defect sometimes associated with a lack of folic acid in the mother's diet.

Lee's brain stem, which regulates breathing and heartbeat, was probably intact. But his skull had not formed, nor the back of his head, and any bits of upper brain tissue that had developed now steeped, unprotected, in amniotic fluid. He would not see or hear or think.

Anencephaly occurs in 1 in 10,000 live births in the U.S. A very few afflicted infants have survived as long as four months. Nearly all die within days, many within hours, from dehydration, infection or trouble swallowing.

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