A mother's wrenching choice: a short, cherished life or none?

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.

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.

The bad news

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.

When she was 16, Danielle aborted a pregnancy at her father's insistence, she said. She has made peace with that. 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.

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

An unformed skull

It was five weeks before another ultrasound, in late July, clarified the problem with Lee Jr. 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.

The specialists she consulted offered Danielle a "selective reduction": They could abort the malformed twin. That might give her a better chance of carrying the healthy baby to term. But there was also a chance that the procedure could harm Leah. Danielle was not interested in weighing risks.

"I couldn't make God's decision," she said. "Everything happens for a reason."

Danielle looked wary when she came to Choices Medical Clinic for her first consultation one morning in late September. Almost as soon as she sat down, she was in tears.

"What hospice really means is that we're going to share this with you. We're going to bear it with you," Dr. Scott Stringfield, the clinic's medical director, told her.

They talked for more than an hour. Stringfield asked Danielle about her fears, finances, even her heartburn, and listened attentively, jotting notes. Finally, he led her into the clinic's darkened sonogram room. The twins appeared on the screen in blurry black and white.

Another option

Each time she visited the hospice, Danielle was reminded that she had a choice. The windowless beige building next door is Women's Health Care Services, one of the best-known abortion clinics in the nation.

Anti-abortion activists gather outside Women's Health Care Services nearly every day, amid dozens of white crosses they have placed along the sidewalk. They yell at the women who turn into the parking lot: "Mommy, save me! I don't want to die!"

Those shouts disturbed Danielle every time she drove to Choices. She felt she was doing right by her baby and by God. But she understood why other women went next door.

As she neared the start of her third trimester, in mid-October, decisions pressed in on Danielle.

Stringfield had told her Lee would have a much better chance of living a few hours if born by Caesarean section. Vaginal births put a lot of stress on a baby's head; without skulls to protect them, anencephalic infants often do not survive the trauma.

The thought of hurting her son made Danielle cry, but so did the thought of a C-section. The surgery would keep her in the hospital an extra day. Who would watch Dashon and Jonathan? She'd come home sore. What if Jonathan had a seizure? How would she pick him up? "I feel so torn," she said.

Then there was the funeral. She was anxious about how Lee would look in an open casket but mad at herself for worrying about it; she didn't want to be ashamed of her baby.

A prayer ran constantly through her head: Give me strength.

Nurse Tammy Schafer had noticed in an earlier scan that Lee Jr. had a severe cleft lip. From then on, she talked up his cutest features: his long fingers and pert chin, a fringe of hair above his ears.

"I've been bawling all weekend, but after I saw that sonogram, I just don't feel like crying," Danielle said a few hours later. "Sometimes I wish I wasn't pregnant. But then I look at the pictures of the babies and I feel thankful."

The next day, she decided she would ask for a C-section.

"I want that chance with Lee," she said. "I want every single second that God gives me."

It helped that she felt less alone. She was separated from Lee Sr.; he told her he didn't know how to cope with the pending birth and death.

She and Tammy talked about getting a tiny hat to fit Lee's head, about finding a heart-shaped jewel box to hold his ashes, about buying books to explain the concept of death to Dashon and Jonathan. Tammy found a donor to pay for Lee's memorial stone and arranged for a Choices volunteer to drop off groceries now and then.

Making plans

By November, she and Lee had met with a neonatologist to discuss how they would care for their son, and had decided he would receive comfort care only — nothing to prolong his life.

A bereavement counselor had prepared Danielle for Lee's death, explaining how her baby would turn pale as his circulation slowed.

Danielle looked for a basket to nestle Lee in for his funeral, but as a backup, Tammy had given her a small white casket. Danielle kept it in her closet.

Two heartbeats, amplified by fetal monitor, echoed through the overheated hospital room, strong and steady and nearly in sync: 134 beats per minute ... 133 ... 135 ...

It was Tuesday, Dec. 13, and Danielle had been admitted to Wesley Medical Center with unmistakable contractions. Numbed by an epidural, she sat up against her pillows, her hair matted, her face puffy, as the hospice team from Choices held hands around her bed. Danielle bowed her head as Stringfield prayed: "Lord, we appreciate your grace."

Christine Beck, the first patient counseled by the hospice, rubbed Danielle's belly and told her: "We're here for you, honey. It's going to be OK."

Tammy hugged her.

Lee Sr., in scrubs and a surgical mask, held her hand as a nurse wheeled her to the operating room. He had knelt by her bed, his face against hers, when the neonatologist had come in to confirm the do-not-resuscitate orders for their son.

"I'm scared," he told her.

"I am, too."

A moment later, though, she looked up at Lee eagerly: "I can't wait to see them."

The surgeons delivered Leah Jean Crump first — a healthy 4-pound, 2-ounce girl with light cocoa skin, a frizz of black hair and lungs that let the world know she had arrived. "She's beautiful!" Tammy called. "Can you see her?"

Danielle smiled, but her mind was on her son. Lee Charles Crump Jr. was born a minute after his sister, at 4:19 p.m. — wiggling, pink, but struggling.

"He's so cute, Danielle," Tammy called as two nurses grabbed him and rubbed him with a blanket.

"Why don't he cry?" Danielle wailed. "Is he breathing?"

"He's trying," Tammy told her. "C'mon, baby. C'mon."

The nurses pulled a hat over Lee's exposed brain tissue and dressed him hurriedly in the outfit Danielle had picked out, a sweatsuit with a soccer ball on the jacket and the letters MVP.

"Sweet boy," Tammy said. "Here he is, Danielle."

Danielle, heavily medicated, could not focus her eyes. She reached out for her son, murmured, "Hey, little man, I love you." Then she sank back, dazed.

Lee was starting to turn blue.

"We have to keep him going until Mom's awake," nurse Deanna Kowalski shouted. She clamped an oxygen mask over Lee's mouth.

"Just give us a half-hour, baby," Kowalski said. "Just give us a half-hour."

Lee Sr. held the oxygen mask to his son's face as the doctors stitched Danielle. He had flinched when he first saw his baby's mangled head, "but now I'm OK with it," he said. Gently, he stroked Lee's cheek; softly, he murmured "precious child ... precious child of God."

In the recovery room, Danielle opened her arms to receive her son. She rocked the tiny bundle a moment, then pulled back his hat with a groan. "I'm so sorry, baby. Oh, sweetie. I'm so sorry."

The room was bright with balloons and flowers; Lee Sr. was handing out pink and blue bubble-gum cigars. Danielle didn't want to touch her son. The mass on his head was awful — bruised, swollen, worse than the pictures she had been shown in medical texts. Stringfield had told her that anencephalic infants can't feel pain, but it looked like her baby was suffering.

"I'm so sorry, little man," she sobbed.

Someone took the baby and put him back in his bassinet. Danielle looked away.

Winning ways

Danielle was afraid to fall in love with her son, but he had such a way about him.

He cooed at everyone who held him, grabbed their fingers and squeezed tight. When Tammy rubbed him under the chin, he made little hums.

Lee Jr. weighed 3 pounds, 13 ounces, with his clothes on; he was all eyes and chin and cheeks. His daddy couldn't stop stroking his face. "Hey, Junior, how're you doing?" he'd ask.

Leah had been taken to neonatal intensive care as a precaution. She did so well that a few hours after the birth, her nurse said she could briefly leave the ward. So Danielle brought the twins together one last time. She nestled them side by side in a bassinet for photos. Then she cradled her babies, one in each arm, and kissed their perfect little ears.

She was quiet as she looked at them, and when she asked to be wheeled back to her room, she told the nurse she wanted to disconnect Lee's oxygen.

"I'm ready," she said.

Holding on

But the baby adjusted to less oxygen. He slept Tuesday night in his father's arms and in the morning, he opened his eyes. Danielle had to laugh when he started chirping in a rhythmic peep-peep-peep that sounded like a hospital monitor. He mewed and squealed.

To keep him comfortable, Danielle and Lee Sr. asked a nurse to feed him every two hours, a teaspoon of formula through a thin tube in his nose.

Almost every moment of his life, Lee was in someone's arms.

Danielle's mother, Rhonda Wilson, held the baby for hours. She had been anxious about how she would react, but now that he was here, "I feel really at peace," she said. "It's meant for us to have this time with him."

Lee's great-grandmother held him, and a dozen cousins, aunts and uncles. Even Dashon and Jonathan took turns.

Lee slept a second night snuggled up to his daddy. But with the morning light on Thursday, his parents could tell he was fading. His skin was cold and the pink had drained from his cheeks; he breathed in ragged gurgles.

Danielle held him naked to her bare chest, whispering to him, smelling his neck. He still had the strength to wrap his hand around her finger.

When she could no longer endure the waiting, Danielle bundled her son in a white satin blanket embroidered with angel wings. Passing him gently to Lee's cousin Latrina Jones, she went downstairs to feed her daughter.

When she returned an hour later, Lee was limp. Danielle held him in silence a long while, then looked up: "How do you know?"

Tammy unwrapped the blanket and put her stethoscope to Lee's chest. There was silence as she listened and then she said, "He's gone."

It was 11:19 a.m., 43 hours to the minute after his birth.

Lee Sr. cradled the still body against his wet cheek. So softly it was almost imperceptible, he began to hum "Amazing Grace."

Looking beyond

The room filled over the next few hours with family and friends and doctors. Linda Spear, a hospice counselor, knelt by Danielle's chair, talking of angels.

Danielle looked at her in anguish.

"I feel like I'm going to forget everything about him," she said. "I hope he knows how much I loved him."

"It was pure love," Linda assured her.

"It makes me want to get my life right," Danielle said. "So I can see him again."