With hope comes worry

Nate Draper, 16 months old, lay on the couch and gave a piercing wail. His identical twin, Nick, lay nearby, face scrunched. He began to spit up. Their mother stood over them, ready for another cleanup, and kept an eye on her other three youngsters.

This moment of domestic mayhem, she said, was a miracle.

Earlier this year, doctors didn’t give the twins much chance to live. But over the last six months, Nick and Nate have grown into a double handful. Now they fuss, struggle to sit up and demand attention. Together with their two sisters and a brother, all younger than 8, they keep their mother, Nicole Draper, more than busy.

“Considering what we’ve been through,” she said, “it is just totally amazing to have them here.”

Nick and Nate have clear, round eyes and pink, chubby cheeks. Not the gray-blue cheeks that signaled how desperately ill they were last winter and spring. That’s when doctors at UCLA’s Mattel Children’s Hospital gave Nick a tiny new heart -- and Nate surprised everyone by recovering on his own from a rare heart disease that nearly killed them both.

Now Nate weighs 23 pounds, like a normal 16-month-old. Nick weighs 18 pounds. Both are developing distinct personalities. “Pick up Nick, and he gets excited,” Nicole Draper said. “He throws up his hands and shakes them. Pick up Nate, and he’s more reserved.” Nick coos, gurgles, grinds the few teeth he has and laughs easily. Nate cries loudly but is usually more calm.

Nicole takes the twins with her almost everywhere she goes. Her family is a lot of work, but she is thankful to do it.

Nick and Nate were born in Phoenix with dilated cardiomyopathy, a rare disease that caused their misshapen hearts to barely pump. They were quickly flown to UCLA.

The boys nearly died during those first few days. They rallied, but there was ominous news: Both would need heart transplants, and fast. Doctors said that if the twins did not get new hearts by the time they were ready to walk, when their bodies would need better circulation, they were going to die.

So began a long, torturous journey. With their babies hospitalized at UCLA, Nicole and her husband, Mike Draper, moved to Los Angeles along with their other children: a daughter, who was 6, and another pair of twins, a boy and girl, who were 4. The Drapers struggled to make ends meet and keep from falling into deep depression. They lived in a one-bedroom apartment and then in two small rooms at a hotel.

Nick got a transplant in February but nearly died on the operating table when his new heart failed to beat well. He was put on a heart bypass machine, his chest left open for days as he clung to life. Finally, his heart began beating strongly -- so strong and steady that he was allowed to move into the hotel with Mike and Nicole and the three older kids.

Then Nate’s heart worsened. His doctors said he was weeks from death, if not days. Somehow -- and his doctors still don’t know why -- Nate’s heart began to work better in April. Within weeks, it was doing its job, as a normal heart should. Doctors at UCLA said they had never seen anything like the sudden turnaround and called it close to a miracle. The Drapers, who are devout Mormons, believed everything that had happened showed the hand of God.

They would need that faith. Days before they finally drove home to Phoenix, tests showed that Nate could not see. The connection between his eyes and brain wasn’t working, possibly from spending so much time at the hospital without much stimulation, or because he experienced bleeding on the brain in his first week of life.

Life moves hectically

Now, six months after the Drapers left Los Angeles, to be with them on a weekday is to be with a family treading through a maze of work and worry. In the early morning, Mike, 34, leaves the family’s modest, three-bedroom home and goes to work in the admissions department at the University of Phoenix. Nicole, 33, spends her days on the move, all the while caring for Nick and Nate with the skill and patience of a nurse.

She is the first to admit that her babies have a long way to go. Nick has trouble focusing without crossing his eyes. Nate’s eyes float aimlessly. The Drapers think he’s beginning to see, that he responds to light and sudden movement. They say specialists have told them Nate can improve with therapy.

The months in the hospital, when the twins’ movement was restricted so they wouldn’t tax their hearts, have left the boys weak and uncoordinated. Neither can crawl. They cannot sit up and roll over without help.

Eating is also a problem. In the hospital they were fed through tubes that attached to their stomachs, and they grew dependent. Today they can barely chew and swallow even a teaspoon of crunched-up cereal. Both boys get most of their nutrition from a pump that slowly eases warmed baby formula into them through a pair of tubes, one snaking through Nate’s stomach and the other through Nick’s nose. There are five feedings a day, and each takes nearly two hours.

Nicole spends much of her time administering 13 powerful drugs -- including prednisone, captopril, magnesium sulfate and protonix -- to Nick and Nate.

Some of the drugs help the boys’ hearts to beat strongly. Some help suppress Nick’s immune system so his body does not recognize his heart as something foreign. But not having a healthy immune system exacts a price. Nick can’t seem to fight off colds and flu. Twice already, his parents have had him admitted to a Phoenix hospital for overnight stays because he was so ill. Both times he came home fine.

“We didn’t think it would be like this when we left Los Angeles,” Mike said.

Nicole said tests have shown that the twins’ brains work fine. They should be able to learn and think normally when they grow older, but it will take time for them to catch up.

And fear will always be present for their parents. Just as Nate’s heart suddenly got better, his doctors say it could suddenly get worse. Nick’s, as happens with all transplanted hearts, will eventually be rejected and need to be replaced, probably sometime in the next dozen years or so.

For now, life moves hectically. The boys lie in shell-shaped baby carriers or their two-seat stroller as they shuttle with their mother to pick up their siblings from school.

They accompany Nicole to the grocery store, the dry cleaners, the post office. Three times a week they are visited by vision specialists or therapists who push and prod and try to get them to chew, swallow, lift their necks and sit upright.

Last week, Nick and Nate went with their mother to a Phoenix doctor for a series of tests. Both of their hearts were beating normally. Nate’s had improved since he returned to Phoenix.

As she sat with the twins in the doctor’s office, Nicole got a surprise. In walked Shawnee Brunt, a girl who 14 years ago was one of the first infants to get a heart transplant at UCLA. Shawnee had come to know Nick and Nate and their family last year when she returned to the UCLA hospital for a second transplant. She lived for a while on the same third-floor wing as the Draper twins.

Today, Shawnee is back in Phoenix, her hometown, and back in school. She has to have the same constant heart checkups as the Draper twins, but she told Nicole she was feeling great.

When the reunion was over, Nicole tightened her lips and looked at Nick and Nate. Shawnee, she said, was a reminder.

“We’ll always have that worry,” she said. “And with Nick we know there’s going to come the time when something is going to happen and we’re going to be right back where we started.”

kurt.streeter@latimes.com

For past articles on Nick and Nate, see latimes.com/twins.