At Last, Home Is Where Their Hearts Will Be
From the moment they so desperately arrived in Los Angeles last July, Mike and Nicole Draper had been waiting for this, for the chance to gather their belongings and their twin baby boys and head home to Arizona. Now that moment was just a few ticks of the clock away.
“What a journey,” said Nicole Draper, standing in the Westwood hotel room she and her family have shared for months. She bit her lip. She looked at her husband. She scanned a table loaded with the last items to be packed up for the long drive home: 21 bottles and vials of the liquid medication that her babies will need every day to stay alive. “What a journey. And it’s not over.”
Eleven months after arriving in Los Angeles in search of medical help that could keep their twins alive, the Drapers left Los Angeles for Phoenix on Thursday, bringing the boys to live in the family home for the first time.
The journey home down Interstate 10, with Mike in a minivan and Nicole and the twins following in a beat-up sedan, was freighted with significance. Going home meant hope.
“There were a lot of times when we did not anticipate this result,” Mike Draper said as he helped his wife pack up. “Early on, we were concerned that both boys might not make it even a few weeks.... Now, to go home together? We’ve come full circle.”
The Draper twins were born in Phoenix last July, both suffering from dilated cardiomyopathy, a condition that severely weakened their hearts and left them fighting for life. The babies were quickly transferred to UCLA Medical Center’s Mattel Children’s Hospital, which had more experience dealing with their condition than hospitals in Arizona.
Within a week, doctors at UCLA concluded that both boys would need heart transplants. They placed Nick on the nationwide transplant list. Nate, though, had to recover from a near-fatal brain bleed before he could be placed on the list.
Each week was a struggle. Nick and Nate’s parents packed up their three other children and moved temporarily to Los Angeles. They initially lived an hour from the hospital, in a one-bedroom apartment at the Ronald McDonald House in Hollywood.
The Drapers relied on their Mormon faith to counter fear, particularly because time didn’t appear to be on their side. Doctors at UCLA speculated that Nick and Nate would need transplants by the time they walked, because then their bodies would need hearts that beat strongly and provided better circulation.
Nick received a transplant in February, but there were complications. The new heart didn’t beat well at first. Nick’s chest was kept open, and he was put on a heart bypass machine that kept him alive for several days. Finally, his new heart began to do its job. By April his health had improved so much that his doctors allowed him to return to his parents, who by then had moved their family and much of their belongings into two small rooms at Tiverton House, a hotel across the street from the hospital.
As Nick became comfortable with his new family, Nate began to struggle. He was alternately fussy and lethargic. Color drained from his pink skin. Worse, tests showed his heart was weakening. His condition grew so bad that his doctors considered putting him on a bypass machine. If that happened he would likely need a new heart in two to three weeks. Juan Alejos, the cardiologist in charge of the twins’ care, recalled on Thursday: “He was at the brink.”
For reasons doctors still can’t figure out, Nate’s health suddenly improved. Each day he grew stronger and livelier. Tests showed his heart was beating as strongly as any healthy heart. “I’ve never seen anything like what happened,” Alejos said. Nate’s condition improved so much that his doctors decided to take him off the transplant list, something they had never done for a child who had once been so close to death. By May, Nate was discharged from the hospital too.
The struggles didn’t cease, Mike Draper recalled. Just as Nate was being discharged, neurological tests showed that his brain wasn’t picking up signals from his eyes. Nate’s doctors and family believe his eyes and brain could reconnect once he is home, but for now he is blind.
“He’s going to be fine,” Mike Draper said. “If he’s blind, if he can’t see much, we’ll deal with that. At least he’s alive. We’ll take that. We can deal with it.”
There will be much more to deal with in Phoenix. The Drapers estimate that in their first months home they’ll have to take the twins to five to 10 doctor appointments a week. What’s more, the Drapers will have to keep their home stocked like a pharmacy. Nate takes eight medications a day, his brother 15. They must get those drugs at precise times, from early morning to late at night.
Alejos said UCLA will keep close watch on the twins. Nick and Nate will occasionally return to UCLA for checkups.
And whatever happens in the immediate future, both boys might have to get new hearts -- Nate because his heart could weaken, and Nick because transplanted hearts are often eventually rejected.
As they packed their bags and watched their babies nap through the bustle, Mike and Nicole Draper spoke of how, despite the hardship, their family felt stronger and more optimistic than ever.
“It’s not just a miracle that we have seen, with these two boys surviving like this, but it is several miracles,” he said. “So many miracles that it is just crazy. We just have so much to be thankful for.”