Infant Goes Home, but His Twin Is Still Too Ill

It was a reunion of sorts for two infant boys fighting for their lives. In a cramped hospital room at UCLA on Tuesday afternoon, Michael and Nicole Draper held their tiny babies close enough so the twins could touch.

“Just like we said last night, we brought Nate to see you,” whispered Michael Draper into the ear of Nicholas, whose eyes were just opening after a nap. “We brought your brother back.”

The boys seemed to look at each other. Then Nicholas closed his eyes and Nate yawned, both of them unaware -- at 15 weeks old -- how significant the moment was.

Nicholas and Nate Draper need new hearts. The twins were born in July with a rare condition known as dilated cardiomyopathy, leaving their heart muscles too weak to circulate blood properly.

Until this week both boys had spent nearly all their lives in the intensive-care ward at UCLA’s Mattel Children’s Hospital, their doctors working to keep them alive and as healthy as possible. If they don’t receive transplants soon, the doctors say, they will probably not live much longer.

Monday, the twins spent the night apart for the first time. After deciding that Nate was responding to drug therapy and doing reasonably well, doctors allowed his parents to take him home.

“It was a good moment, but also sad,” Nicole Draper said. “Just before we left the hospital room with Nate, it really hit us that the two of them were going to be apart. That’s hard for twins. And for us, it was hard to keep it together.”

The move home is only a slight reprieve for Nate. Though he looks healthy, with chubby arms and round eyes that seem to investigate everything around him, he is still near death, said Dr. Juan Alejos, who has overseen his care.

The drugs that are allowing Nate’s heart to work more efficiently won’t be as effective as he grows. Alejos said that if Nate didn’t have a new heart by the time he started crawling, when the body needs the heart to work harder, his chances of survival would drop dramatically.

Nicholas is faring worse. Drug therapy hasn’t worked as well, and though he is still considered healthy enough for a transplant, he is smaller and paler than his brother. Alejos said Nicholas was too ill to leave the hospital.

The boys were born in Phoenix, where the family lived until recently. They were so close to dying that within days they were flown to UCLA, which had more expertise in infant heart care.

Nicole stayed in Los Angeles to be with the boys. Michael got a job transfer and moved with the couple’s three other children -- a girl, 6, and another pair of twins, a boy and girl, 4.

Now the Drapers live in a $15-a-night, one-bedroom apartment at the Ronald McDonald House in Hollywood. They are learning to cope with the painful realization that for their boys to live, other young children must die and grieving parents will have to be willing to allow organ donation.

They are also learning, as best as they can, to deal with the painful uncertainty.

“We decided over the weekend to stop guessing what is going to happen,” Michael Draper said. “Stop trying to predict and worrying about the future. Just enjoy what we have and enjoy each day.”

At home Monday, the couple perched Nate on the bed. “The three older kids gathered there around their little brother,” Michael Draper said. “They were so excited to have him home for the first time. It just felt like family.”

Back in the hospital room Tuesday, as heart monitors beeped and a nurse checked intravenous tubes, Nicole Draper looked at her husband and the two babies.

“It just felt normal,” she said of the previous evening. “That was nice.”