Even if the babies manage to get heart transplants in time,
Nicole and Michael Draper may never know why their twin sons were
born with a rare heart disease.
Identical twins Nicholas and Nathaniel Draper were born on July
11 in Phoenix, Ariz., with dilated cardiomyopathy, a condition in
which the heart muscles are enlarged and too weak to pump blood
efficiently. If not treated, serious forms of the condition can
rapidly deteriorate into organ failure, resulting in death.
“It is unusual for cardiomyopathy to develop in a fetus,
and incredibly rare to see it in twins,” said Mark Plunkett,
director of the UCLA Pediatric Heart Transplant program, in a July
25 press release.
Juan Alejos, medical director of the UCLA Pediatric Heart
Transplant program, said that in his 15 years in cardiology he has
never seen a case of infants who were born with the disease.
Within three days of their birth, the twins’ condition had
declined considerably, and they were brought to the Mattel
Children’s Hospital at UCLA to be evaluated for heart
transplants.
Doctors estimate that without transplants, the boys have three
to six months to live.
“Without medical intervention, they probably
wouldn’t have survived to this point,” Alejos said.
Nicholas was placed on the waiting list, but because of a
brain-bleed complication, Nathaniel was not. Nathaniel’s
complication has since cleared up, and he is scheduled to be
re-evaluated early this week, Alejos said.
Meanwhile, doctors are trying to keep the twins healthy and
developmentally on track.
“The first thing we have to do is keep their hearts
pumping as much as possible,” Alejos said, adding that it is
also very important to keep the rest of their organ systems strong
and help the babies grow normally.
“If they don’t gain weight, we still have a
problem,” Alejos said.
The twins’ parents, Nicole and Michael, found out about
their sons’ heart condition while Nicole was in her 30th week
of pregnancy. Both organ donors themselves, they hope to make the
public aware of the need for and benefits of organ donation.
Nicole and Michael said that should their children not survive,
they plan to donate their organs to other children in need.
If parents choose to donate their children’s organs,
“it’s a way for their child to live on, and would help
their grieving process, I would think,” Michael said.
The parents said that the situation is taking a severe emotional
and financial toll on their family.
Michael is commuting between his job in Phoenix and weekends
with his family in Los Angeles, while Nicole is staying with their
other three children ““ a 5-year-old daughter and 4-year-old
twins ““ at the Ronald McDonald House, which provides low-cost
housing for families who must temporarily relocate for their
children to receive medical treatment.
“Our lives have pretty much been turned upside
down,” Nicole said. “We’re trying to live in two
different states.”
Right now, the family is focusing more on the twins’
progress than on the medical costs and housing and travel expenses,
the Drapers said. A fund has been set up to raise money for the
twins’ medical care.
“We didn’t think they’d even make it through
the first weekend. Especially Nathaniel,” Nicole said, adding
that they are trying to take it day by day.
“There’s no rule book,” Michael said.
“We’re just trying to make it work.”
The cause of the twins’ condition remains unknown ““
Alejos said it could be genetic or viral.
But if hearts become available, it is very likely that the
transplant surgery will be successful, Alejos said.
“The survival rate at one year is about 95 percent,”
Alejos said. “If we can find the heart, we’ll be
OK.”