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Matthew and Amy Santos holding baby Lyla

Lionís Heart
Hearst Foundationsí gift supports congenital heart disease patients and their families

June 2014

by Lety Laurel

When Lyla Grace Santos was born, her parents, Matthew and Amy, noticed she was breathing rapidly. But everything looked fineóborn at 41 weeks, she was a solid 8 pounds, 7 ounces.

Two hours later, she was blue.

Within hours, arrangements were made to fly her from her Fort Hood, Texas, hospital to San Antonioís University Hospital, where, at just 2 days old, she would undergo open-heart surgery to repair the constriction in her heart.

As they were wheeling her from the helicopter, the song The Lion Sleeps Tonight was playing on a nearby television in University Hospital. From that moment on, Lyla became the Santos family's lioness, and she was about to undergo the fight of her life.

Nearly a month later, Amy Santos cradles her daughter as a tube carries milk through Lylaís nose to her belly. Her husband works to install a lion mobile over her temporary crib, a radiant warmer in the neonatal intensive care unit. Theyíre tired and missing their 4-year-old son, Logan, who is staying in Fort Hood with relatives, but grateful that Lyla is alive and hopeful that soon the family of four will be home together.

"We didnít expect this to happen," said Matthew Santos, explaining that their son originally went to visit relatives as the due date grew closer. What began as a two-week adventure has become a prolonged separation, and the toddler often asks if theyíre still a family.

  Matthew and Amy Santos with son Logan and newborn daughter Lyla
Shortly after Lyla Grace Santos was born, the family took their first portrait together. L-R: newborn Lyla Grace, mom Amy, brother Logan, and father Matthew.
"He didnít understand at first," Matthew Santos said. "He got to see her the night she was born, and then she went into the NICU and he hasnít seen her since. He sends videos every day showing her how much he loves her."

Thatís not the only challenge. When they were told their daughter would need emergency surgery and would be flown out of their city by helicopter, there was a confusing whirlwind of activityóat one point, the Santoses didnít even know what city they were in, much less where they would stay.

"We got here and we didnít know what we would do or how long we would be here. We didnít even know her exact diagnosis," Matthew Santos said.

This confusion is typical for families who have just been told their newborn has a critical heart condition, said S. Adil Husain, M.D., director of pediatric cardiothoracic surgery and associate professor in the Department of Cardiothoracic Surgery in the School of Medicine.

"The stresses are unimaginable," said Dr. Husain, who leads the universityís Congenital Heart Program, which delivers specialized, coordinated care to babies with congenital heart defects. Around 350 heart surgical procedures are performed each year through the program.

"Forty percent of our work is done on babies who are less than a month old when they need an operation," he added. "In addition, about 40 percent of our patients are from outside of Bexar County, so we have a significant number of families who have to temporarily relocate to San Antonio while their newborn child is undergoing a very complex heart operation."

Dr. Husain is the inaugural holder of the William Randolph Hearst Endowed Chair in Congenital Heart Disease. The chair was created through a $350,000 gift from the Hearst Foundations to the Health Science Center to help attract and retain leaders in pediatric cardiothoracic surgery and to ensure excellence of care for South Texas children with congenital heart disease. The Hearst Foundationsí leadership gift was matched through a gift from the Greehey Family Foundation for this lifesaving program and the pediatric surgical team that it supports. The vision is to continue building the Hearst chair to reach $1 million in the endowment.

"When someone has just had a baby, theyíre excited, but then they find out their baby has complex heart disease and requires a major heart operation. Itís a medical challenge, a psychological challenge and a familial challenge on all levels," Dr. Husain said. "Our entire team and program are committed to not just the neonate, but also to the entire family unit."

While there are more than 40 types of congenital heart defects, one of the most complex is single ventricle disorder, in which the heart has only one adequately sized functional pumping chamber instead of the two chambers that are found in a normal heart. Typically, this condition requires a series of three invasive surgeries in the first two to three years of life. As recently as two decades ago, this disorder was fatal. Today, 60 to 70 percent of children born with single ventricle heart defects survive all three surgeries due to improvements in surgical techniques and the emergence of multidisciplinary teams to care for these fragile patients.

But relocating, even temporarily, puts a strain on the family. Because of that, "Weíve done a lot in our program to treat these families in a unique way," Dr. Husain said.

And with the Hearst Foundations' gift, even more will be possible. Already, it has been the catalyst for expansion of the Health Science Centerís congenital heart disease program. The programís priorities include creating bilingual education modules to explain congenital heart disease, the required surgeries, the sequence of care and the expected outcomes. Other priorities are providing social work evaluation, psychological family support and patient navigation, and helping families identify housing and other services during lengthy inpatient treatment periods. Funds will also go toward telemedicine support for inter-stage follow-up care of patients outside the San Antonio area.

Longer term, Hearst endowment funds will allow Dr. Husain and his team to track programmatic outcomes to help in research. And, with the growth of the program, medical students and residents will have more opportunities to experience the medical and surgical care provided, so a pipeline of future health care providers will be cultivated in this field, Dr. Husain said.

"Our team is exceptionally passionate about this project," Dr. Husain said. "It has been wonderful and gratifying to have the support of the Hearst Foundations. They have become a valuable partner in our mission to ensure excellence of care for South Texasí most vulnerable patients and their families."

George Irish, vice president and Eastern director for the Hearst Foundations, said the gift recognizes the groundbreaking work being done.

"What Dr. Husain and his team at the Health Science Center are doing is really impressive," he said. "They cover an extensive service region and care for critically ill babies in the first days of their lives. Not too long ago these infants would have perished, but the doctors here have a very high success rate of saving them so they can go home with their parents. The Hearst Foundations saw this as an investment in the future of health for children and their families."

Under the dim blue lights of the NICU, the Santoses talk quietly about going home. They donít know when Lyla will be well enough to leave the hospital, but both agree theyíll stay as long as they have to. Their lioness will not be rushed.

They know more now about Lylaís illness, hypoplastic aortic arch, or narrowing, of the aorta, and they have a clear idea of what lies ahead for their daughter. It has been a long journey of discovery, and they say they are happy that the Hearst Foundations' grant will provide invaluable assistance to other families who may someday travel the same path.

Already, the resources and support Lylaís doctors and staff have provided are more than they could have hoped for, Matthew Santos said.

"Itís overwhelming to me, to tell the truth. I canít ever repay what theyíve done for us. Weíll be forever grateful."


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