20 Years of Hope: Harley and James

All this year, as we celebrate 20 Years of Hope — LWB’s 20^th anniversary — we will be sharing updates on some of the wonderful children this community has impacted over the last two decades. Today, we look back on a very special set of twins who touched our hearts completely.

In the fall of 2015, a young woman working as a migrant worker in China went into labor. She and her husband, both just 20 years old, were members of the Yi ethnic minority from far western China. They had traveled almost 600 miles from their impoverished rural village to search for work, and she was quite nervous preparing to have a baby so far from home.

Later that evening, the couple learned they were about to become parents of twins. Since they were not able to afford medical care during the pregnancy, this was a complete and happy surprise. As soon as the babies were delivered, however, the mood of the medical team changed. The tiny boys, whom we called Harley and James, had been born conjoined. Their bodies were fused together at the pelvis.

Harley and James’ parents had no money for their newborn twins’ unexpected medical needs. The father begged his family and friends back home for help, borrowing money from everyone he knew in their rural village to pay for his new sons’ mounting expenses.

Soon, however, the twins’ bill grew so high that the hospital knew the poverty-stricken couple would not be able to cover the costs. The very next day, the little boys were discharged from the maternity hospital. The young parents, too afraid to return yet to their village, made their way to Shanghai instead. They had heard that surgeons there had successfully separated other conjoined twins.

When the new parents learned the cost of such a complicated medical procedure, however, they felt completely hopeless. Thankfully, they soon met our medical manager in China who assured them we would do our best to help.

When we first let our supporters know about conjoined twins Harley and James, we could not have imagined the international outpouring of love and concern. Donations started arriving from people all over the world who gave what they could to make sure the boys received their separation surgery. Within a few short weeks, all the funding needed for the twins’ operation was in place.

As detailed testing and scans got underway, we learned that in addition to sharing one pelvic structure, Harley and James had only one liver. They also had intestines and bladders which were partially fused. Doctors from the departments of orthopedics, anesthesiology, urology, and general surgery all met together to come up with the best path forward for the boys, as their rare anatomy had never been seen before. They told us it would be one of the most difficult operations ever undertaken at the hospital.

Seven years ago, on a cold winter morning in Shanghai, Harley and James were wheeled into the operating room and placed onto a single surgical table. Their parents had given the boys a final goodbye hug and now waited anxiously in the hospital hallway, gripping each other’s hands and praying their sons would survive the long operation ahead.

Over the next eight hours, orthopedic surgeons worked carefully to separate the pelvic cavity, followed by a team of general surgeons who stepped in to separate the liver and intestines. At 4:20 in the afternoon, the twins officially became two individual babies.

Harley was handed off to waiting surgeons and his own OR table, and then each boy’s independent operation began.

Urologists painstakingly undertook the difficult task of repairing the twins’ unique bladders so that each baby could have their own urinary tract. The boys were then handed off once more to a new team of surgeons, who worked on the boys’ intestines. Finally, the orthopedic team returned yet again to begin constructing a separate pelvis for each of the twins. The surgery went three hours longer than expected, but late that evening Harley and James were moved into the pediatric ICU.

Before the operation, the medical team had marked each boy’s forehead with a different colored dot to help everyone know who was who after separation. It was a bit surreal to glimpse James (with a red dot) and Harley (marked with blue) each in their own individual incubator after only seeing them entwined for the past several months.

The next morning, their parents were allowed to go into the ICU to see their now-separate babies for the very first time. They couldn’t stop smiling and touching their little boys, and we could only wonder what Harley and James were thinking now being in separate cribs!

Today, in 2023, James and Harley are completely healthy little boys, adored to the moon and back by their parents. They still have a special bond between them where they finish each other’s sentences and always seem to know what the other is thinking.

We could only smile when the twins’ mother told us they are truly “naughty” boys. That’s a high compliment in China, as it translates to a combination of being curious, clever, and OH SO ACTIVE. That’s all we could have hoped for back in 2016 when these precious little boys were still joined at the pelvis.

Last week, Harley and James’ very proud mom shared these new photos of her precious boys. Aren’t they absolutely adorable?

Harley and James also have a new role in their lives: being big brothers! Yes, mom told us all three boys keep her busy from morning to night. Their father still works as a migrant worker, so he is only able to return home a few times a year. When we heard from her last week, the whole family was busy preparing for him to return for the Chinese New Year. Can’t you just imagine their excitement when they welcomed their daddy home?

These are the wonderful outcomes that YOU make possible when you support our work around the world. 

Stay tuned for more Stories of Hope to come as Love Without Boundaries celebrates our 20th anniversary!

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