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A FAMILY'S ORDEAL

For Ailing Twins' Parents, Hope Vies With Anguish

They fight daily against exhaustion, doubt as boys wait for new hearts.

January 22, 2006|Kurt Streeter | Times Staff Writer

She steered with one knee, reached into the back seat and stroked the tears from her little boy's cheek. Drivers honked and shouted behind their rolled-up windows. One gave her the single-finger salute. She hardly noticed. She had something more important to worry about: saving her babies.

"Please, Nate," she begged. "Hey, baby. Hey, baby Nate. Please don't cry. Just hold on. Please, baby. Nate, please."

It was a bright morning in November. Nicole Draper was late for a doctor's appointment, again; winding through dense traffic, again; trying to do everything at once, again. She drove with her left hand and used her right to answer her cellphone. It was her husband. He was at home, sick from the never-ending worry.

"Honey," she asked him, "how are you feeling?"

Baby Nate bellowed from the back seat. His chest heaved.

She dropped the phone, reached around, held a pacifier in his mouth and maneuvered the minivan down Sunset Boulevard.

Nicole hated it when Nate cried like this. She looked at me. I stared helplessly from the passenger seat.

"I've got to calm him down," she said.

Nate spat the pacifier into his car seat and wailed louder.

"This is not a good sign," she said. "Him crying like this. Not good at all."

Finally, she pulled into the parking lot at the UCLA Medical Center. No, it wasn't good, and Nicole knew it.

The month before, Nicole, 32, and her husband, Mike , 33, had stood alongside a brace of doctors at a news conference.

It was about the Drapers' identical twins. Nick and Nate were 3 months old then. They would die, the doctors said, if they did not get new hearts. If they didn't die any sooner, they would probably die when they learned to walk. Their hearts were so frail that walking would be too much.

Still, there was good news that day. Nate had been doing well enough to leave the hospital. This would be his first full day with his parents, two sisters and another brother. Two of the older kids were also twins.

Nate could stay with them, in a one-bedroom apartment at Ronald McDonald House, an hour's drive east of the hospital, where families with sick children lived.

As long as he didn't grow weaker.

After the news conference, I walked with the Drapers down a hospital hallway to Nick's room. Mike picked up his little son. He spoke of how hard it was to hold everything together, how he probably couldn't if it weren't for Nicole. She held Nate. She spoke of how having him at home would make everything seem almost normal.

Would new hearts ever come?

That meant two other children would have to die.

Babies. Maybe toddlers.

Adult hearts, even teenage hearts, would be too big. And that meant somewhere, probably in the lobby of a hospital emergency room, a counselor would have to ask a grieving family a jolting question: May we take your child's heart for a transplant?

The Drapers needed the answer to be yes. Twice.

If new hearts did come, then what? The transplant surgery might be too much. It kills some children. Others survive, get well and live until their bodies reject the hearts. About half live for 10 years. Then they go back onto a transplant list and wait for another heart. Or they die.

Mike said his family lived under a cloud of fear. "We have to do everything in our power to push that fear away," he said. "Sometimes I don't know how we do that." He paused. "I don't know how. Every single day...."

An Anxious Visit

And now we were taking Nate back to the hospital. He had been home at the apartment for 30 days. Would the doctors readmit him? His crying sounded serious. Nicole carried him, car seat and all, from the parking lot into the medical center, then to the third floor, where 52 of the sickest children in Los Angeles live.

The doctors weren't ready to see Nate yet. So Nicole took him to check on brother Nick. She stood over Nick's bed. Her frame cast a shadow on the wall. Nick was covered with blankets. Wires and tubes trailed from his right arm and right leg. The wires went to a monitor that tracked his pulse. The tubes went to clear bags of liquid drugs that kept him alive.

She took Nate from his car seat and laid him on the bed next to Nick. Neither baby cried. Slowly, she lifted Nick's shirt. She looked at him. She felt his warm skin. With her thumb, she gently massaged his chest, just over his heart.

"It's good when I can have them together," she said, without taking her eyes off them. "Because every time I leave and take Nate home I am separating them. I feel like I am betraying them every time I take them apart."

She and Nate, back in his car seat, went with Nick to the hospital basement for an echocardiogram, a high-powered examination of his heart. She heard it fill the room -- swish, swish, swish. On a black and white screen, she watched his heart labor. She saw Nick's eyes open.

"The left side pumping chamber is four to five times bigger than it should be," a doctor said. "He's not getting much blood to the heart. But it looks the same as it has recently. We are happy for that."

Nicole stood silently.

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