Xiao Hua (“Little Flower”) was brought in by her parents to the First Affiliated Hospital of the Kunming Medical University in Yunnan (called “Yunda Hospital”). Her parents were migrant workers from Guizhou, a neighboring province. They came with a hope that doctors here can “fix” their little girl who is now 5-month old.
After a pre-birth echo exam, the doctor told Xiao Hua’s parents that there was a small hole between upper two chambers (called “ASD”) and a big one between lower two chambers (called “VSD”) in Xiao Hua’s heart. With these two openings, Xiao Hua’s heart mixed oxygen-rich blood from the lung with oxygen-poor blood circulating back from the body. Without repairing, Xia Hua would not grow properly because the defects would put more burden on the heart and lung and eventually damage their functions permanently.
Xiao Hua’s case caught the attention of a team of doctors and nurses visiting from America. They are medical volunteers for Children’s HeartLink, an international non-profit group that works on improving treatment of congenital heart diseases in underserved parts of the world. Congenital heart diseases affect one in every 120 new births, and are the most common birth defects. There is a large disparity of CHD care around the world. Newborns in western countries are routinely screened for critical CHDs, and typically treated in their first year of life. Ninety percent of children with CHD were born in places that do not have adequate care for CHD. For example, Minnesota, a state in the US with four million population, has about 65,000 new births each year. The three pediatric heart centers operate on approximately 500 CHDs each year. In the province of Yunnan China, the population is about 40 million with 500,000 babies born each year. There were two hospitals that operate on 2,000 CHD cases a year, which serve half of the babies who might need surgeries. The partnership of YunDa with Children’s HeartLink aimed to improve capacity and quality of CHD care and serve Yunnan and neighboring provinces and countries such as Myanmar, Laos and Vietnam.
The American team was led by Children’s HeartLink’s Andreas Tsakistos and Dr. St. Louis, a pediatric heart surgeon from Children’s Mercy Hospital in Kansas City. The team has been working with the Yunda Hospital in the last four years to help them improve the overall quality to treat complex heart conditions. Xiao Hua’s procedure would not be complex for older children, but her young age and 6-kg body weight would push the limit of the local team to secure a safe and successful outcome.
Dr. Lee Pyles, a pediatric cardiologist from West Virginia University, examined Xiao Hua before the surgery with Dr. Wang Yu, the local echo doctor. They gave the go-ahead of the surgery with their confirmation of the diagnosis indicating the ASD was 5 mm and VSD of 10 mm, which are big holes for a small heart. Dr. Tao Jie led the surgery with his local team of heart surgeons and OR team with assistance from Dr. St. Louis and the perfusionist, Mr. Doug Zavidil from Children’s Mercy Hospital.
Pediatric heart surgery is the ultimate team sport in modern medicine. For Xiao Hua’s surgery, an anesthesia doctor put her to a deep sleep during the procedure. A team of perfusionists took over the function of the heart and the lung using a machine to maintain blood circulation in the body, letting the heart rest for the operation (called “bypass procedure”). The smaller the body is, the harder the procedure is for perfusionists to manage the margins of errors. For example, the blood volume for a 60-kg adult (132 lbs) is around 4,500 ml; for a 6-kg baby (13 lbs) is 450 ml. A small error of the bypass machine running at a wrong speed would have a 10 times impact in a Xiao Hua than in an adult. Mr. Doug Zavidil worked with the four-member local team on how Dr. St. Louis would typically choose instruments that specialized for small babies. During the procedure, they discussed constantly how to control the blood flow, temperature and medication to maximize the condition for the surgeons to operate.
Drs. Tao and St. Louis operated as if they had been partners for years. They communicated through an interpreter, although each seemed to know exactly what would be a next step. The surgical techniques for Xia Hua’s procedure are almost identical everywhere following standardized protocols and medical guidelines of international professional societies. The exchanges between Dr. Tao and Dr. St. Louis were more on their personal experience as cardiac surgeons. Dr. St. Louis routinely operates on small babies a few months of age with complex conditions. He is also among a few pediatric surgeons in America who specialize on pediatric heart transplant. Dr. Tao operates both on adults and children. He wants to take his team to operate on smaller babies like Xia Hua, and make it a routine procedure.
Xiao Hua was on the bypass machine for nearly an hour. The two openings inside her heart were patched by the two surgeons using the sack (called pericardium) that surrounds the heart. The perfusionists slowly waned Xia Hua off the bypass machine and let her heart take over. The electricity in the heart started first, each heart beat followed by a stronger pump of blood back into her tiny body. After the confirmation of all positive indications of the heart, the surgeons closed Xia Hua’s chest. Xiao Hua is now a zipper baby, a term pediatric doctors like to call babies with a mended but healthy heart.
The ICU team took over after the surgery. The post-surgery care for Xia Hua was as important as the surgery itself. The heart was on medication to help maintain its function. Her breathing was assisted by a ventilator while the lung regained its function. The Children’s HeartLink team included Dr. Arif Somani from University of Minnesota, ICU nurse Karin Mayo from Children’s Healthcare of Atlanta, Nurse Beth Lang and Respiratory Therapist Kimi Lucas from Children’s Mercy Hospital. They worked with the local team led by Dr. He and head nurse Yang from transferring Xia Hua from the OR to the ICU. The two teams had many exchanges on how to manage Xia Hua on and off the ventilator and how to manage post-op pain. There are differences in routine practices between the two healthcare systems, changing minds can be as hard as changing hearts. Children’s HeartLink has been successful in establishing partnership during its training visits between medical volunteers and local teams based on building trust, on-site collaboration and communicating on common goals on quality improvement.
During the week of Children’s HeartLink visit, the two teams operated together on five children for heart surgery. Dr. Edgard Bendaly, a pediatric interventional cardiologist from Sanford Hospital in South Dakota worked with the local interventional team on a dozen more children’s whose heart defects could be repaired through minimally invasive procedures using catheters and closing devices.
Xia Hua’s parents met Dr. St. Louis outside the ICU. They wished to get a photo of Xia Hua with the entire HeartLink team. However, many team members were gone to different places during the one-week visit. Xia Hua was safely transferred from the ICU to a regular unit and discharged from the hospital after 10 days. Perhaps her parents wish could be met when the team returns to Yunnan next year. Their wish reminded a quote from Dr. Kumar, a pediatric cardiologist who works with HeartLink in India, “Parents everywhere want the same for their children: a relief from suffering and a promise of a long and healthy life.”
Dr. Tao Jie and Dr. St. Louis operated together during the Children’s HeartLink visit in YunDa Hospital in Nov 2017
Dr. Pyles examined Xia Hua after her heart surgery.