Beth Phillips will never forget that day at Children’s of Alabama in November of 2012. She and her husband, Jonathan, were in shock as cardiologist Yung Lau, MD, confirmed their greatest fear for their firstborn son, Henry.
“I remember him telling us ‘I know now that I have told you your son has a heart defect you won’t hear anything else I have to say because you are trying to process. You can call me at any time and I will answer any questions you may have.’
“We were amazed that the director of the Division of Pediatric Cardiology told us that we could call him whenever we needed to,” says Beth.
Henry had never shown any signs of illness or symptoms of a heart defect until his 9- month well baby checkup when pediatrician Bill Whitaker, MD, detected a murmur. Henry was referred to the cardiology team at Children’s, where it was determined he had been born with a hole in his heart—specifically, an Atrial Septal Defect (ASD).
“As he grew, the hole grew larger—pumping oxygenated blood back into his lungs and putting pressure and strain on his heart, lungs and other major organs,” Beth explains. “In most ASD cases, the hole closes on its own or can be closed in a heart catheterization lab. But the hole in Henry’s heart was one of the largest Dr. Lau and cardiothoracic surgeon Robert Dabal, MD, had seen.”
Because of the love and support they already had experienced at Children’s, Beth and Jonathan never considered getting a second opinion—and Dr. Dabal performed open heart surgery to correct the defect when Henry was 13 months old.
“Our ‘Henry bug’ is so brave and so determined,” Beth says. “I have a video of him walking the halls of the CCU two days post-op. He never slowed down!”
Today, Henry has completely recovered from his surgery and visits his cardiologist for checkups only every two years. Occasionally, Beth reads him a book her parents bought Henry while he was hospitalized entitled I Couldn’t Love You More.
“This story is about the love for a child and God’s unconditional love,” Beth says. “We had each person who cared for Henry at Children’s sign this book—and we will cherish the messages they wrote Henry forever.
“Now as I watch him run and play, I think about how great our Heavenly Father is to have placed such gifted and compassionate people in our lives to help heal his heart,” she adds. “There is no question God has big plans for our Henry and I know that he will achieve anything his heart desires.”
Employees of the Bruno Pediatric Heart Center are celebrating stories, like that of Jase Franklin, whose life was saved through teamwork, cutting-edge medicine and the remarkable facilities at Children’s.
When Jordan and Jarrett Franklin of Pelham prepared the nursery for the arrival of their newborn son, Jase, they never imagined the number of people it would take to get him home to see it.
Shortly after his birth, Jase’s caregivers at a local hospital noticed that his oxygen saturations were too low. He was transferred to the CVICU at Children’s, where he was quickly diagnosed with the most severe congenital heart defect, hypoplastic left heart syndrome (HLHS), which means he was born with only one pumping ventricle.
As if the news wasn’t devastating enough, they were told that he would not survive without undergoing a high-risk operation called a Norwood operation. They were relieved to learn that the CV team at the Bruno Pediatric Heart Center has helped many infants survive this condition and go home with their families.
“It was a real roller coaster of emotions,” said Jase’s mother, Jordan Franklin. “We were really excited about becoming parents. Jase was three days old and we were getting ready to be discharged from the hospital to go home, then the next thing we knew he was being transported to Children’s because they discovered that Jase had a heart condition.”
Three days later, Jase’s parents kissed him goodbye as he was taken to the CVOR, not knowing if they would ever see him again. After eight long hours in the operating room, the procedure was complete, and Jase returned to the CVICU in critical condition. There the family received the news that he wasn’t doing as well as expected.
In the CVICU, Jase’s oxygen saturations continued to be dangerously low despite aggressive resuscitation from the medical team. Therefore Jase was urgently taken to the hybrid cardiac catheterization lab. Jase remained in the hybrid suite all night, surrounded by the team of cardiothoracic surgeons, interventional cardiologists, cardiac intensivists, anesthesiologists, nurses, technicians, CRNAs, and perfusionists. Despite fatigue, the team worked diligently together to restore the blood flow in Jase’s tiny heart.
“It was clear that Jase wasn’t recovering as expected and needed more surgery,” said Dr. Robert Dabal, cardiothoracic surgeon. “Working through the night, the interventional cardiology team worked with me and my surgical team to diagnose and successfully fix his problem.”
The following morning, Jase returned to the CVICU. He remained critically ill, requiring ECMO, but his heart had now been fixed and began to grow stronger. He weaned from ECMO the next day and continued to improve over the next several days, finally getting off life support a week after his surgery.
“Jase’s miraculous recovery from his heroic interventions and through his tenuous days in the CVICU would not have been possible without the hard work, dedication and teamwork of too many people to mention, most important our cardiac nurses, who were crucial in the transformation of Jase from the sickest child in Alabama to the baby boy his parents were praying for,” said Dr. Jeffrey Alten, Medical Director of the CVICU.
Jase was discharged home with his parents 24 days after arriving at Children’s.
“The nurses really prepared us for taking care of Jase when we went home, but taking care of a child with such a serious condition can be daunting especially for first-time parents who are learning how to take care of any baby,” said Jarrett Franklin.
Because of the high-risk nature of his heart condition, Jase is part of the “Hearts at Home” program, implemented to provide home monitoring and support for babies with complex congenital heart disease. “Most of our parents feel overwhelmed by taking their baby home following surgery. With close monitoring, we are able to help them identify problems early. We want them to know they are not alone in caring for their baby,” said Sarah Torsch, CV nurse practitioner and coordinator of the Hearts at Home program.
Jase is now thriving and recently returned to Children’s for the second of three major cardiac surgeries that he will need in his childhood. He is now back at home, happy with his family.
Just moments after Jackson Griffin was born on October 5, 2012, doctors at Flowers Hospital in Dothan knew he would need the help of Children’s of Alabama and its heart surgery team in order to survive. “We found out that Jackson had a congenital heart defect,” says his mother, Debbie. “He was flown to Children’s three hours after he was born.”
Jackson suffered from “d-transposition of the great arteries.” When d-transposition occurs in the heart, the aorta and pulmonary arteries are reversed. Because the arteries are connecting to the wrong chambers in the heart, the oxygenated and deoxygenated blood cannot mix appropriately – and that makes the baby look very blue.
“Jackson needed a complex procedure called an arterial switch,” says his surgeon, Robert J. Dabal M.D., an assistant professor of Cardiothoracic Surgery at UAB. “You move the aorta and pulmonary artery back to their normal positions. The aorta is connected to the left ventricle, and the pulmonary artery is connected to the right ventricle. The coronary arteries, which carry the oxygen-rich blood that nourishes the heart muscle, also are re-attached to the new aorta.”
The operation lasted five hours, and the change in Jackson was immediate, Debbie says. “Before the surgery, he was blue and struggling for every breath he took. But after the surgery, even though he was swollen and puffy, he just had a peace about him. He could breathe easily, his color was good and he looked alive.”
Daniel, Jackson’s father, says he appreciates the care given to the entire family while Jackson was hospitalized. “We had chaplains checking on us. Jackson had two nurses there just for him the entire time he was in the Cardiac ICU. Two doctors were only a shout away – not ever more than 20 feet from him. They treated Jackson as if he were their own son and tried to comfort us as much as they could.”
Despite his rocky start to life, a year later Jackson is hitting all his developmental milestones – and Dr. Dabal credits his entire team when he speaks about his patient’s excellent prognosis. “We have a completely contained cardiovascular center at Children’s – one with a comprehensive ICU including all of the staff needed to help children like Jackson,” he says. “It takes a lot of people to do what we do, and that’s a strength that we have such an excellent team.
“Jackson is fortunate because no one would ever know (about his heart defect) unless they see the scar on his chest. He’ll be a normal, healthy, active little boy.”
Ben Golden's story is about patience and planning, a big dream and perfect timing – and how all these things came together at Children's of Alabama to save Ben's life.
When Ben was born on July 13, 2012, he appeared to be perfectly healthy. But four weeks later, he was having problems breathing. His mother, Laura, took him to the emergency department where doctors discovered an enlarged heart and a deadly diagnosis: dilated cardiomyopathy. Within days, he was placed on the heart transplant waiting list.
While some infants with cardiomyopathy may go years without the need for a heart transplant, Ben was not so fortunate. "His condition grew progressively worse after his diagnosis," says Dr. James K. Kirklin, professor and director of the Division of Cardiothoracic Surgery at Children's. "He needed strong intravenous medications to keep his heart going, and he was in grave danger of dying before we could locate an appropriate donor."
Thirty-nine days later came word that a heart available in California might be a perfect match for Ben. It would prove to be a monumental day not only for Ben and his family, but also for Dr. Kirklin and the UAB and Children's of Alabama cardiovascular services team.
During the time Ben was waiting for a new heart, a dream 30 years in the making was coming to fruition with the opening of the Pediatric Cardiovascular Service in the new Benjamin Russell Hospital for Children – just steps away from UAB's cardiac doctors and connected via crosswalks.
"My father, John Kirklin, who really began cardiac surgery in Birmingham 30 years ago, had wanted to move the pediatric service to Children's, but at that time it was considered to be a duplication of services," says Dr. Kirklin. "So it was a special thrill for me to be a major player in making a single platform of care between Children's and UAB available to better serve children like Ben."
Ben's surgery was not without challenges – it took six hours just to fly the donor heart in from California. "The combination of these factors: a donor from a great distance, the surgery occurring so soon after the move to Children's, the heart immediately functioning perfectly and the child experiencing no immunologic rejection or infection problems – all of that together really was quite miraculous," says Dr. Kirlin.
"The nurses, physicians and intensivists at Children's managed this as if they had been doing it every year for the last 10 years," he adds. "It was absolutely spectacular."
Ben's mother could not agree more strongly. "Ben now has a chance to grow up, and he would not have had that without Children's and everything that they've done," she says. "Thank you, thank you, thank you! You all have been fantastic!"
Triplet Libby Carter, like her identical sister Caroline and fraternal brother Henry, weighed less than 3 pounds at their August 5, 2011 birth at just 30 weeks gestation. But unlike her siblings, Libby had a much larger problem to overcome than premature weight.
"She had a very sick little heart," says her mother, Rebecca Carter.
A grape-sized heart, in fact, with a big defect: TGA, or Transposition of the Great Arteries, which occurs when the positions of the two main arteries going out of the heart—the pulmonary artery and the aorta—are switched, or transposed.
So Rebecca and her husband, Clinton, researched hospitals and physicians nationwide to find the optimal place to care for their seriously ill baby girl. "We were going to take her anywhere we needed to take her to have the best," she says. They didn't have to go far. Their pick, the Pediatric Cardiovascular program at UAB, is a relatively short drive from their Montgomery, Alabama home. A consultation with Dr. Robert Dabal, a pediatric heart surgeon whose expertise includes the arterial switch procedure that Libby required to fix her heart, sealed the deal. "After we spoke with him, we didn't have any doubt," Rebecca says. "He was incredible."
First Libby needed to grow before getting her heart fixed. Dr. Rune Toms, a specialist in neonatal cardiac intensive care, and his team managed those critical 1st 9 weeks and made sure that she grew well and that her premature lungs and heart remained stable.
At two days old, Dr. William McMahon, a pediatric interventional cardiologist, successfully performed a balloon atrial septostomy, which allowed Libby's oxygen levels to stabilize. Then, when Libby was 74 days old and just over 5 pounds, Dr. Dabal performed the arterial switch operation.
Lilly's prematurity further complicated her postoperative course with pulmonary hypertension. Dr. Jeffrey Alten and the Pediatric Cardiac Intensive Care team, provided state of the art therapies to help Libby's heart and lungs regain their strength. After 10 days in the ICU, she was transferred to the telemetry ward, and a few days later Libby went home - one week after her due date.
"The physicians and nursing staff helped make the stay at the hospital easier to bear as well. "I was never in the dark about anything. They made sure I understood."
Recently, Libby celebrated her first birthday, and her mom couldn't let the day pass without sending Dr. Dabal a note. "I said, 'Thank you for making this possible. If it wasn't for him, she wouldn't be here."
"They work miracles," Rebecca says.
Nine-year-old Greer Underwood was a perfectly healthy little girl. "She never had much more than an ear infection," says her mom, Dawn.
But in February 2011, her parents suspected something was seriously wrong. "She started complaining of shortness of breath," Dawn says. Fatigue and a dry cough were her only other symptoms.
Greer, who lives in North Alabama was initially misdiagnosed with sinusitis, then pneumonia. After a couple of trips to an area hospital, she was airlifted to Children's of Alabama, where she was quickly diagnosed with Dilated Cardiomyopathy. "You're shocked, you're totally shocked," Dawn says. "It's gone from sinusitis to heart failure in 10 days."
Shortly after the diagnosis, critical care physician Dr. Jeffrey Alten determined she should be transferred to Pediatric Cardiology at UAB. "We got to UAB, and within 10 minutes, Greer had a major stroke," Dawn says. The outlook was grim, but members of UAB's stroke team were there, and they dissolved the large clot in Greer's brain. Afterward, attention turned back to Greer's heart, which was in late-stage failure. Dr. James Kirklin, Director of the Division of Cardiothoracic Surgery, studied options for a heart-pumping device that could bridge Greer to a transplant, and went with the HeartWare LVAD, or Left Ventricular Assist Device.
"At the time, she was the only child in the U.S. to have the HeartWare LVAD," Dawn says. Dr. Kirklin didn't want to rush a transplant, she says, because Greer needed to work with physical therapy and become stronger Mother's Day, 2011, cardiothoracic surgeon Dr. David McGiffin replaced her ailing heart.
Today, Greer is a healthy 11-year-old girl. "I like to dance. I like to hang out with my friends. I like to swim," she says. Greer and her 7-year old brother Bauer recently celebrated their birthdays by asking for gift cards to help outfit the new pediatric cardiac playroom at Children's of Alabama. "It's a very, very special place for us." And she believes it is, along with UAB, where God led them to one fateful night.
"Greer believes God had us at the right place at the right time with the right people."