By Mary Ungrangsee

Twins Emma and Brendan, along with their older sister Caitlyn, have been making lots of drawings in their new home at the Ronald McDonald House in Los Angeles, California.  The children moved there from Phoenix with their mother when their two newborn twin brothers, Nick and Nate, were moved to the UCLA Mattel Children’s Hospital 20 miles away.  The kids are making the drawings in the hopes that their brothers will be coming home sometime soon.

The twins, Nicholas and Nathaniel Draper, were exceptional little boys even before they were born.  As the second set of twins in the family (after fraternal twins Emma and Brandon) Nick and Nate were a highly anticipated addition to the Draper family.  When mother Nicole was seven and one-half months along with the pregnancy, doctors discovered that both boys suffer from dilated cardiomyopathy, an extremely rare heart condition that prevents the heart muscles from effectively pumping enough blood to keep the heart healthy.

In short, both boys need new hearts.

"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.

Dilated cardiomyopathy is a condition that can result from many different causes, including genetic factors and viral infections, although doctors aren’t sure yet the exact cause in Nick and Nate’s case.  In dilated cardiomyopathy, the heart is stretched out or enlarged and weak, and as a result pumps blood less efficiently.  This makes the heart more prone to blood clots and frequently results in heart failure.  The condition is frequently misdiagnosed or even undetected.  Heart transplant is considered one of the best ways to treat the condition, especially in young and otherwise healthy patients, according to the website of the American Heart Association.

Making the Donor List

Born on July 11, Nick and Nate were separately transferred on July 13 and 14 from their hospital in Phoenix to the UCLA Mattel Children’s Hospital, where Nick was immediately placed on the waiting list for a donor infant heart. 

His brother Nate wasn’t able to join him on the waiting list until some time later.  Nate was suffering from bleeding on the brain, a serious complication that forced doctors to wait and see if the infant would be strong enough to undergo the transplant surgery.  By August 4, he had improved enough to join Nick on the waiting list. 

The twins will receive new hearts in the order they were put on the waiting list.  Doctors say they don’t know how many infants are ahead of the boys on the list, but they don’t think that could be many at such a young age.

And so the waiting continues for Nick and Nate.

Finding a single infant donor is a challenge in itself, but finding two makes the challenge even greater. 

"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 twins' parents, Michael and Nicole 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.

Michael and Nicole had always thought that they would be willing organ donors should a tragedy ever arise, but they never expected the issue of organ donation to hit so close to home.  “We had thought of it, but it is like anything else — you never think it will happen to you.  Our interest and awareness rose exponentially as we were thrust into a life-or-death situation with two of our children, especially at the beginning when they were even more critically ill,” says Nicole.

Fighting the Daily Fight

Nicole and the older children moved to the Ronald McDonald House in Los Angeles when the twins were moved to UCLA.  Dad Michael works during the week in the Admissions Department of the University of Phoenix, and comes to join them in LA on the weekends.  Caitlyn has now enrolled in first grade in Los Angeles in order to stay with the family.

It has been an incredibly stressful time for the family, but they have been encouraged by the positive steps the twins have been taking.  Nick and Nate were able to be taken off ventilators and intravenous feeding tubes and now are able to bottle feed. Doctors have been able to start weaning them off some of their IV medications. 

In an exciting development, the twins were moved out of the neonatal intensive care unit and into a regular room in the hospital’s pediatric wing.  “This is a positive step for Nick and Nate,” said Dr. Juan Alejos, medical director of the pediatric heart transplant program at UCLA’s Mattel Children’s Hospital.  “They are developing well and continue to gain weight — currently both weigh more than 9 pounds.”

Alejos added that the twins’ sharing a room on the pediatric floor will provide an environment that will help nurture the twins’ development during the unknown length of time that they must wait for a donor hearts.  Transplants are still a necessity for both boys, although their heart function has improved somewhat.

Nicole and Michael attribute the twins’ progress to the prayers and faith of their family and countless friends who have come to their aid in this difficult time.  Nicole’s sister Ami Loosli postponed starting college to come and help in Los Angeles.  Friends have brought groceries and offered child care services. One friend has been on the phone with airlines searching for discounts and frequent flier miles to ease some of the burden of the constant travel back and forth for Michael.  A ward member spent countless hours building and maintaining a web site (www.nickandnate.org) to help the family raise awareness.  Co-workers and neighbors have held fundraisers and bake sales to help alleviate some of the financial stress of the ordeal.

Michael and Nicole say that they have learned not to be too proud to ask for what they need.  The generosity and love of those around them has made it possible for their extraordinarily difficult situation to be a little bit easier.  The wish list posted on their web site includes the following items:

·         Two infant hearts (or sign up as a donor to help someone else!)

·         Housing near the UCLA Mattel Children's Hospital
(for Nick and Nate's Mom, Aunt and 3 siblings to stay nearby)

·         Airfare to/from LAX and PHX on weekends for Nick and Nate's Dad

·         Frequent flier miles to pay for airfare.

·         Mechanics labor for minor repairs to Draper family's van

·         Gas cards to help when driving family to/from Phoenix to Los Angeles.

·         Los Angeles city bus pass (to pick up Caitlin from school)

·         Postage stamps to send thank you cards

·         Cash Donations to help pay medical costs.

·         Send letters of hope & encouragement

·         Lots of prayers!

Keep an Eternal Perspective

Part of what has held Michael, Nicole, and all the children together throughout this ordeal is their eternal perspective, gained from being members of The Church of Jesus Christ of Latter-day Saints.  Knowing that the twins will always be a part of their family makes dealing with the uncertainty of each day a little bit easier.  Regardless of the outcome, their family is safe when encircled in the arms of a loving Heavenly Father and a Savior who knows intimately every heartache, literal and figurative, that the family experiences.

The family has truly shared this experience together.  “The other three kids absolutely love their little brothers,” says Nicole.  “They have been able to visit and hold them and can't wait for them to come home.  We can tell that our situation has affected them, but they are good sports and it helps that they have each other, a caring extended family, and that they started school.  The Ronald McDonald house also has great resources for them such as activities, toys, and other children for them to play with.”

This is a family on the giving and receiving ends of true and abiding unconditional love.  The outpouring of support from their community is a mirror to the love the family feels for their two little boys.  

“We want to say thank you for all of the help, support and prayers,” says Nicole.  “We have a wonderful family, an incredible ward and great community.  People have been so generous with their resources, time, talents, possessions and love and we are so grateful.

“Continue the prayers; they are working.  We know that God is in charge and He loves us, that eventually we will get through this period of time, and that things will be O.K. in the end.”

To read more about Nick and Nate, or to make a donation,
please visit their website at www.nickandnate.org.