Children's HeartLink

Children's 9 months ago

Dear Friends of Children's HeartLink,

Greetings from Changchun, China! Children’s HeartLink is here at Jilin Heart Hospital with a team of medical volunteers from NewYork-Presbyterian Hospital. A busy week is coming to an end. Several children received surgical or interventional treatment this week. Our main objective here is to help improve the diagnosis and treatment of congenital heart disease in children - focusing on the poorest families - by teaching and educating medical professionals. The goal of this mission and our relationship with Jilin Heart Hospital is to build a sustainable program and leave the doctors and nurses of Changchun with skills that they can put to use after our team leaves. Your support makes all of this possible.

The photo attached is of Xaio Shue. This is a true story of destiny. She is 11 years old and lives in a small village near Yushu, China. Her father and mother are farmers – they grow soybeans and corn, which are the main crops in this region. Her father completed middle school and her mother, elementary school; their annual income is 8,000 RMB per year ($1,500). They live with the grandfather and Xaio Shue's younger sister in a small house in the countryside.

Soon after Xaio Shue was born, her lips turned blue and she caught colds often. The family took her to a doctor and learned that their daughter had a heart condition. They sought help at several hospitals, but were told that the condition was not treatable and that their daughter only had about four years of life until they would see a decline. The prognosis was correct and Xaio Shue's health did decline -- so much so, that she could no longer walk to school - she needed to be carried. Her father would carry her, each day, 3 1/2 miles on foot to the village school. Then he would return to pick her up. Though she wanted to play with other children, she had a difficult time and would become frustrated.

Her parents remembered the team from NewYork-Presbyterian being at Jilin Heart Hospital in 2008 and when they heard on the news that the team was coming back, they began their journey to Changchun. They walked for 1 ½ hours to the bus station in the nearest city, Yushu. From there, it was a four-hour bus ride to Changchun. They arrived five days before the team. They waited.

Last Sunday, the team was doing echocardiographs and reviewing cases to determine the patient list for the week. Xaio Shue was not even on the list, but her echo was hanging on the wall in the room where the echos were being done. Dr. Pat Flynn, NewYork-Presbyterian cardiologist, noticed the echo because it was a highly unusual case. He was intrigued and asked to see the patient. Several of the planned cases fell off the schedule for various reasons and it became clear to the team that Xaio Shue was the best case to do... it would be her only hope.

The successful operation (an extracardiac Fontan) was performed yesterday -- the first of its kind ever done in the entire Jilin Province. Today, Xaio Shue was sitting up in her bed, having her hair braided and eating strawberries. Her lips are a rosy pink and her smile, though timid, is a testament of her will. Everything aligned for this child to receive the care she did. As Dr. Jonathan Chen, NewYork-Presbyterian surgeon, said, “Each year there's one case that the patient has hit the lottery . . . this year, it was Xaio Shue.”

Her parents were so incredibly happy when we spoke with them today. Their smiles were non-stop and their gratitude overflowing. The team from NewYork-Presbyterian is amazed at how quickly she is recovering.

Warmest regards,

Elizabeth Perlich Bickel, President, Children’s HeartLink
John Cushing, International Programs Advisor, Children’s HeartLink