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A Gift from the Heart

Santiago sized

Santiago became San Diego’s youngest heart transplant recipient in March 2015. 

Mom has much to be grateful for this Thanksgiving

By Christina Orlovsky Page

As Americans across the nation give thanks around the dinner table this Nov. 26, one San Diego mom will have more reason than most to be grateful. Na’ara Arenas will be celebrating her son Santiago’s first birthday — and giving thanks for the anonymous family that made this milestone possible.

In March 2015, at just 4 months old, Santiago became San Diego’s youngest heart transplant recipient and the fourth pediatric patient to receive a donor heart at Rady Children’s Hospital-San Diego, which performed its first heart transplant in January.

Thanks to the new Heart Transplant Program, families like Santiago’s no longer have to travel to Los Angeles or beyond to undergo a transplant –– a benefit that made all the difference in the world to Na’ara when she found out Santiago was born with dilated cardiomyopathy, a disease in which the heart muscle is very enlarged and weaker than normal.

Na’ara knew the disease all too well –– it had led to the untimely death of her first infant son in 2009.

Waiting for the call
“When I found out he had the same condition, I was devastated because I didn’t know it could happen again,” Na’ara says. “But it happened exactly the same way as with my first son: I started having contractions early and they delivered him at 35 weeks. Right away they started talking about options, including a transplant, but I kept thinking they were going to send me to L.A. When my husband and I found out the transplant could be done here, we said, ‘This is it. We have to take this opportunity.’”

Santiago received care in Rady Children’s Acute Cardiac Unit (ACU) while he awaited a donor heart. Extremely ill, he needed advanced therapies and technology to treat his worsening condition.

“The advanced treatments and machines we have for children waiting for donor hearts are not
without serious complications; the hardest part is keeping them healthy and stable until a donor heart becomes available,” explains Rakesh Singh, M.D., transplant cardiologist and medical director of heart failure and transplantation at Rady Children’s and an assistant professor of clinical pediatrics at UC San Diego.

For Santiago and his family, the wait wasn’t easy. He continued to get sicker and sicker and required lifesaving interventions and round-the-clock care.

“As time went on, Santiago’s heart function really started to affect his quality of life,” explains Denise Suttner, M.D., attending neonatologist at Rady Children’s and a clinical professor at UC San Diego.“He was irritable and fatigued and lost interest in eating. His need for heart failure medications and additional life support increased—all to buy time until he could get a heart. We were very concerned that he was running out of time.”

A brighter future
Time was finally on Santiago’s side on March 10 when Na’ara got the call she had been hoping and praying for.

“We were filled with joy, fear and sadness for the other family that we knew were going through a painful loss,” Na’ara says.

Once he received his new heart, Santiago required as many as 15 medications to prevent rejection and infection as well as vitamins to boost his immune system. After a year, he will likely remain on three or four medications twice daily, every day, for the rest of his life—a life, say his doctors, that can be long and healthy.

“He has an excellent prognosis,” says Eric Devaney, M.D., surgical director of cardiac transplantation at Rady Children’s and an associate professor of surgery at UC San Diego. “The good news is that when we do transplants in babies, their immune system becomes tolerant and they require fewer medications and tend to do better than patients who have a transplant later in life.”

Adds Dr. Singh: “There are many infants around the world who have the same heart for over 20 years before they undergo a second or third transplant, and that’s our hope. If they take care of this heart, meaning they take medications and attend follow-up visits, there’s no reason why this heart won’t be healthy for decades.”

Santiago was released from the hospital in May and continues to make strides toward being a healthy baby boy. “He’s a normal baby, but not a normal baby, and we have to take a lot more precautions,” Na’ara says. “But right now, I’m just enjoying him, knowing we have a long time ahead of us.”

Time, she says, that would not be possible if not for the strangers that selflessly chose to donate their child’s organs.

“I never gave much thought to donation before this happened, but it is a truly amazing gift,” Na’ara says. “I hope to one day be able to thank the family and introduce them to Santiago so they can see what they did. They granted my prayer.”

Home is where the heart is

January 2015 marked a milestone for Rady Children’s Hospital-San Diego when a team of
surgeons successfully performed the hospital’s first pediatric heart transplant on 11-year-old Eric Montaño. Eric suffered from restrictive cardiomyopathy, a condition that affects the heart’s ability to fill with blood and eventually leads to heart failure. Since January, five other children under the age of 11—all diagnosed with cardiomyopathy—received donor hearts at Rady Children’s, including Eric’s twin brother, Raul, and their cousin Jeevan Trejo.

The Heart Transplant Program at Rady Children’s was long in the making, inspired by the leadership of John Lamberti, M.D., director of Rady Children’s Heart Institute and a clinical professor at UC San Diego. Dr. Lamberti recognized the need to perform heart transplants in San Diego back in 2005, and that vision led to building a world-class team of physicians and surgeons, along with the invaluable support of donors, who provided millions of dollars in funding to get the program off the ground.

“I left San Diego in 2000 and for five years worked at two major medical centers with pediatric transplant programs,” Dr. Lamberti says. “During that time I saw what you coulddo with heart transplantation and devices for kids with heart failure, and I knew San Diego needed to do it. When I came back in 2005, my goal was to start a transplant program at Rady Children’s—not just to meet the needs of patients but also the families who had to be uprooted to Los Angeles or Loma Linda. It’s very disruptive for families’ lives, and now we can prevent that.”

Six new hearts and six new futures. And this is just the beginning.

Originally published in The San Diego Union-Tribune, October 2015