Twins with rare disease improving

Twin brothers with a rare heart disease and in need of heart
transplants have improved in health since arriving at UCLA.

The 12-week-old identical twin boys, Nicholas and Nathaniel
Draper, were transferred from the neonatal intensive care unit to
the pediatric unit at UCLA’s Mattel Children’s Hospital
about two weeks ago.

“They are still critically stable and they still need
medications,” said Juan Alejos, medical director of the UCLA
Pediatric Heart Transplant program.

“Their hearts haven’t gotten better, they are just
tolerating how their hearts are functioning now,” he
said.

Nicholas and Nathaniel are on a donor list waiting for hearts.
Since arriving from their home in Phoenix, they have improved in
health and changed from a higher to a lower critical status.

“They have gained weight and they are bottle
feeding,” said Nicole Draper, the twins’ mother.

“We know they are improving and we are very happy their
condition is more stable right now.”

Both twins currently weigh about 10 pounds. The bigger the twins
are, the less urgently they need heart transplants, although they
are still both in need of organ donors.

The twins’ heart condition, dilated cardiomyopathy,
results in weak heart muscles that inefficiently pump blood.
Doctors say it is very rare for babies to have this condition and
even rarer for twins to both have cardiomyopathy.

“They’ve improved quite dramatically since they
first arrived at UCLA although they continue to have heart failure
and both require heart transplants,” said Mark Plunkett,
director of the UCLA Pediatric Heart Transplant program.

Their parents are now able to hold and feed the boys. “You
couldn’t hold them because they had so many wires and their
condition was so critical. … Now that they are on one medication
we are able to hold them; they are able to wear their little
outfits that we got them and we’re able to feed them,”
said Michael Draper, the father of the twins.

Currently, the boys are on a small amount of intravenous
medication, which is a dramatic reduction to the amount of
medications they needed when they first arrived at UCLA’s
Mattel Children’s hospital.

“They don’t need the intensive care setting. They
can be cared a little bit more by the family and they don’t
need as much vigilance,” Alejos said. “Overall I think
they are moving forward, which is good.”

Nathaniel had to undergo surgery unrelated to the cardiomyopathy
to close a blood vessel that is supposed to naturally close after
birth. During pregnancy, the placenta is involved with exchanging
oxygen and carbon dioxide for the baby through the mother’s
circulation instead of the baby’s lungs.

Subsequently, a fetal blood vessel directs a lot of blood away
from the lungs. Once the baby is born and breathes, circulation to
the lungs is increased as the blood vessel closes. Since this did
not occur with Nathaniel, doctors had to surgically close the
vessel.

“It can cause the heart to do double the work. It can
strain the heart,” Alejos said.

Since the surgery, Nathaniel’s health has improved.

“They have done remarkably well considering the condition
they were in,” Plunkett said.

“Both are going to wait a significant amount of time, at
least several months probably, to get an appropriate donor,”
he added.

The Draper family has had a difficult time being apart since
Michael must work at the University of Phoenix while Nicole and
their other three children stay at the Ronald McDonald House in
L.A. so they can be with the twins.

“We know that the babies are doing well partly because of
the great medical staff at UCLA, with whom we have been impressed,
and partly because of the prayers of friends, family and
strangers,” Nicole Draper said.

For more information, visit, www.nickandnate.org.

Leave a comment

Your email address will not be published. Required fields are marked *