Monday, June 30, 2014

July 2014 Featured Child: Yan's Story

This month's featured child is little Yan, who arrived at little Flower on June 21st. Unlike many of the tiny newborns who come to us at only a few days or weeks old, Yan is almost a year and a half old, and he arrived with several clues telling us that he has a loving family somewhere who did all they could to care for him.

When we posted an update about his sparked a huge conversation in the comments, where dozens of people voiced their thoughts about his situation. We can never know the full story behind Yan's arrival here at Little Flower, but whatever the reasons, children are abandoned by the hundreds every year, and a vast percentage of them do have some sort of medical problem or disability...which is why our work never stops!

Yan in particular has a severe heart defect. It was certainly apparent from his bluish skin that he wasn't getting enough oxygen. Here are some of the photos that his orphanage first sent us when he arrived there a couple weeks ago:

When he first arrived at our Beijing Infant Care Home--a totally unfamiliar place filled with strangers, he was--quite predictably--terrified.

But our staff made sure to hold and comfort him, until he finally started to smile and play a little bit. The staff also noticed that he had a five-color bracelet and anklet on, which is a traditional sign of good luck and safety in some parts of China, especially during the Dragon Boat Festival, which was celebrated in China a few weeks ago.

Upon arrival, he was soon admitted to Cardiac ICU at the hospital for testing. The doctors stabilized him, but could not confirm a diagnosis. Possibilities included dextrocardia, pulmonary atresia, and tricuspid atresia--all very complex congenital heart defects. Tricuspid atresia, for instance, is a defect in which one of the valves between two of the heart's chambers isn't formed.

After he was stabilized in the ICU, Yan was transferred to the regular ward, and more tests were ordered, including a heart CT scan and echocardiogram. We wanted to get more specific details about his heart's anatomy and confirm a diagnosis as soon as possible in order to see what steps we could take in terms of surgical repair. 

It was eventually found that his main problems are dextrocardia, in which the heart is "reversed" in the chest, pulmonary atresia, and functionally just a single atrium in the heart. In other words, Yan's heart is pointed toward the right side of the chest instead of the normal left side, and there is no opening from the heart to the pulmonary artery, which carries the blood to the lungs for oxygenation. He also has 7.5 mm ASD, 3 mm PDA and a possible problem with his superior vena cava.

What all that boils down to is that Yan's is an extremely complex heart defect, and it looks like right now, a full repair would be too complex, expensive, and risky. Yan will almost certainly need a series of surgeries. Without surgery, severe heart defects like this are usually fatal eventually, either because of heart failure, or because the child’s body is working so hard to stay alive they that do not have the strength to fight other common, minor illnesses. In addition to that, long term severe oxygen deprivation such as his (his oxygen saturation levels are currently in the 40-60% range) also leads to failure to thrive, problems with the developing brain, and other organ failure.

While our medical team is still discussing options, it's likely that we will start with a BT shunt surgery (find out more about this here) as a first stage. Yan will then need a second stage repair surgery in about six months.

The cost of just this first-stage BT shunt surgery will be around 60,000 RMB (about USD $10,000).

Our featured child stories often feature children who have made a lot of progress with Little Flower, and who may already have families ready to adopt them. This month, we're featuring a child who's Little Flower story is just beginning. As you can see, many of these complex cases are incredibly expensive, and we could really use your help!

...There's that smile!

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