for young people with childhood heart disease.

Yineng's Story

Miracles can happen

Written by Yineng, 23 November 2015  |  Atrial Septal Defect (ASD)  Double Outlet Right Ventricle (DORV)  Patent Ductus Arteriosus (PDA)  Pulmonary Atresia  Transposition of the Great Arteries (TGA) 

Hello there, and welcome to a story of hardship, struggles and miracles. But before we get into all that, a little about myself. My name’s Yineng. At the time of writing this, I’m 19, but I might be a little older by the time you’ve come round to reading this. I’m currently doing a full time law and science degree at uni and I think that is killing me more than my heart condition ever will. I enjoy everything from My Little Pony to Game of Thrones and almost everything in between. I am crazy. I am weird. But I haven’t for one moment not been thankful for those who have helped be the person I am today.

I suppose one needs to start at the beginning for this story. I am Chinese. Perhaps you deduced that from my very not-Australian name. I was born in Nanjing, China, in 1996. Who would have known at that time, that little, oblivious me had been born with a heart condition? For all intents and purposes, I was a normal, slightly underweight, healthy baby. Well, until six months later when my mum noticed my lips were beginning to turn blue.

After being rushed to hospital, I was diagnosed with congenital heart disease. In all my total defects number of defects is six: a double outlet in the right ventricle (DORV), transposition of the great arteries (TGA), atrial septum defect (ASD), ventricular septal defect (VSD) and pulmonary atresia (basically born with no pulmonary valve), and patent ductus arteriosus (PDA).

Now, this was 1990s China. The medical technology was poor. Chinese doctors could not save me. “Take your boy home and let him die,” they said to my parents. Not to be dissuaded, my father turned to the one option he could: the budding internet. He put out a plea for help: “Save my dying son.” His English was poor but it was enough. And every day they prayed for someone to see that cry for help, to give them a miracle. Eventually, a miracle did happen.

On the other side of the world, in New Jersey, USA, someone received that plea. Her name was Gloria. Her own son had been born with Childhood Heart Disease (CHD), and after responding to my father’s cry for help, she began making arrangements to try and have me flown to the States for surgery. However, it was not an easy task and took many months. Gloria tried all the hospitals in the area, but none of them would accept a small child from China. Eventually, she turned to the media to try and gain some support. After the story aired of her attempts to save not only me but other Chinese children born with CHD some of the hospitals eventually relented. Once the hospitals agreed, she needed the Chinese Government to agree, as there were still strict laws that prohibited children to fly out of mainland China. The US hospitals had tried for years but still with no success. A Chinese reporter was able to help by translating a heartfelt letter to the Chinese Government and there was eventually agreement to grant travel to children needing treatment. With legal matters secured, it was still problematic financially as someone had to pay for the flight tickets. Eventually Air China agreed to cover the entire costs of the flights, and so I was able to be flown to the USA for heart surgery to save my life.

Gloria then went on to found her not-for-profit organisation, Gloria’s Place of Hope, which helps children living with CHD. Her organisation aimed to help those who could not find the medical care they required in their own country.

I was little over a year old when I had my first operation at Deborah’s Heart and Lung Centre in New Jersey. Of course, I remember none of it. It was a fairly small operation (yes, no heart surgery is small but compared with others), and a shunt was placed before the PDA closed so blood could flow more easily. At one year old, I was too small for them to do anything further but that surgery would extend my life until I was old enough for the next one. Around the time I was two, the real operation was set to be done. I was flown back to Gloria’s Place of Hope in the States, where I underwent my second and largest open heart surgery. The doctors and surgeons would perform a total repair on my tiny two year old heart. It was perhaps the riskiest but also the one that was the most important. Clearly, it was successful or I would not be here writing this. Unfortunately, I also do not have memories of this surgery or the amazing medical team but their efforts live on in the work they have done to save me. In 2001, I underwent my third heart surgery, where the pulmonary valve had to be replaced. I have vague and faint memories of my time in America and by this time knew full well I had a heart condition, but I was still perhaps too young to fully understand what it meant. At the time, I was just a small happy child who could live his life.

My most recent and fourth open heart surgery was done here in Australia in 2010, in Sydney’s very own Westmead. I had outgrown my pulmonary valve, since even though the rest of my heart grew, the artificial one would not, so it had to be replaced. A repair was also done on my mitral valve, which had shown signs of leaking ever since birth. After this surgery, I was well and truly finally healed, after almost fourteen years of living with a heart condition. I will always live with the effects of a heart condition. I was never able to run as far as other people, or lift as heavy weights, or be as strong. But we take what we can and I like to point out that I'm pretty fast over short distances and my friends have been known to fear the speed of my sprint - well, for at least the first 50 meters - after which I generally drop dead from exhaustion!

The people I’ve met have always been intrigued about my condition. I have never met anyone who saw it as a weakness, or something that made me less. They saw it as something that was a unique part of me and because of that, I was proud of it too. I’m thankful to all those people who have helped save me, and let me be able to live the life I can. One day I want to give back to the world, to help other people as they have done to me. And slowly, bit by bit, I think I’ll be able to do that. After all, miracles do happen.

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chinese, hope, law, miracle, operation, study, surgery, uni

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