Two-week-old identical twins, Nicholas and Nathanial Draper, were born with a heart disease called dilated cardiomyopathy, a condition where the muscles of the heart are not strong enough to pump efficiently. Doctors say it is extremely rare for a baby to be born with this condition, and even rarer that twins would both have it.
The Drapers were born in Phoenix, Ariz., on July 11 and transferred separately on July 13 and 14 to UCLA’s Mattel Children’s Hospital for heart transplantation evaluation because their heart conditions declined so rapidly after birth.
While Nicholas was soon placed on the heart-transplant waiting list, his brother Nathaniel suffered from a complication of bleeding on the brain. Doctors are waiting for this complication to improve before they can consider placing him on the transplant list, which may take up to 2 months.
“It is unusual for cardiomyopathy to develop in a fetus, and incredibly rare to see it in twins,� said Dr. Mark Plunkett, associate professor of cardiothoracic surgery and director of the UCLA Pediatric Heart Transplant program. “A heart transplant is necessary because the heart is weak and cannot pump normally, which can lead to heart failure. It is also unusual to have newborn twins that both need a heart transplant.�
The twins’ parents, Nicole and Michael Draper, hope that by sharing their story they will help make the public aware of the need for organ donors. Currently, there are more than 89,000 Americans awaiting an organ donation, including more than 3,100 Americans who are awaiting a new heart.
Transplant experts say finding a donor heart from another infant can be especially challenging because the pool of potential infant donors is small.
“Infants are less likely than older children to be in a fatal accident � they are protected by car seats, they’re watched more closely at a younger age, they’re not able to run around like older children � they’re just in a more safe environment and less likely to suffer from traumatic brain death,� said Caron Burch, UCLA pediatric heart-transplant coordinator. “Parents of newborns are just not thinking about organ donation. However, by educating people about it, we
hope they would at least be familiar with the subject should they ever be faced with the death of a loved one.�
The Drapers have three other children at home in Phoenix: a 5-year-old girl and 4 year old twins � a boy and a girl.
A fund has been established to help raise money for the twins’ medical care. To help, contact any Wells Fargo Bank to donate to the “Nick and Nate Draper Benefit Fund.� The account number is No. 5763252060.
To become an organ donor, Californians can register online at http://www.donatelifecalifornia.org/ or at the Spanish-language site, http://www.donevidacalifornia.org/.
UCLA’s adult and pediatric heart-transplant program is one of the largest heart-transplant programs in the world and has performed nearly 1,500 heart transplants since the program started in 1984.