Grateful Traveler: Two Worlds, One Child

Locations in this article:  Albuquerque, NM

Kailee Halloween costumeWhat if you had a one-in-a-billion chance to save your dying child?

Would you quit your job to be with her?

Would you move away from a lifetime’s worth of family and friends to be near the doctor you believed in?

Would you turn your life upside down in search of the one bone marrow donor who might keep her alive — even if that person could only be found half a world away?

These were not the kind of questions that Linda and Owen Wells were pondering when the Chinese Social Welfare Institute at Changde put their daughter Kailee in their arms.

At that time, their only thoughts were of taking Kailee home to family and friends in Albuquerque, New Mexico. Linda would return to her law practice. Owen would continue with his graphic design firm. Kailee would have the loving support of three older siblings. Life would be about birthday parties and sleepovers and soccer games for a child much wanted and adored.

And so it seemed life was to be. Until, at her fifth birthday party, Kailee began to feel sick. She developed a high fever. She ached from head to toe. Linda and Owen took her to the ER and were told it was only a virus.

But Kailee got worse. Her parents took her to her pediatrician. Again they were told it was nothing. Two days later her nose began to bleed, and it did not stop for five hours. Linda and Owen returned to the doctor. She tested Kailee’s blood. Instantly she put Kailee into the pediatric intensive care unit. Kailee was diagnosed with severe aplastic anemia, a rare and often fatal bone marrow disease.

Kailee and her mom in the hospitalThe “job” of bone marrow is to produce the white cells, red cells and platelets the body needs to function and to fight off disease. Kailee’s was making almost none. (at right, Linda Wells and Kailee in the hospital) The only hope to cure Kailee was to find a bone marrow donor who was a match. But of the eight million people on the international donor lists, not one was right for Kailee. And although a biological family member would hold the most hope of being a match, no one knew who or where they were.

So medical professionals told the Wells to go home and spend as much quality time as possible with Kailee. In other words, accept the impossible. But this they could not do. Instead, they found Dr. David Margolis, the leading doctor for pediatric aplastic anemia at the Children’s Hospital of Wisconsin. He told them, “If you really want to search for the needle in the haystack, the haystack is in China.”

“I did not think anything would come of it,” says Linda. “But Owen had hope and Dr. Margolis thought it was the best chance we had.”

And so Linda went. This is what she had in her arsenal: One name, the head of the Chinese Red Cross Donor Marrow Program.

This is what she was up against: The fact that only 20,000 people were signed up as bone marrow donors on China’s registry.

If timing is everything in life, Linda’s proved fortuitous. The Chinese government had just made a huge cash infusion into the Red Cross donor program with instructions to build up the registry.

Kailee’s poster in ChineseKailee became the literal poster child for this drive (at left). Radio, TV and newspaper reporters filled the press conferences held by the Red Cross. Kailee’s story was splashed across the headlines. Posters of her face were everywhere.

When Linda entered tiny little shops in out-of-the-way places, people who did not know a word of English would come up to her and say, “Kailee’s mama.” The registry shot up to 350,000 people. But still no match.

At home, Kailee’s health was deteriorating. In hopes of helping her survive, she was given a transplant that was not a perfect match. Her body rejected it. Linda returned to China.

By now, Kailee was a cause celebre in China. The Chinese people had taken her to their hearts. The registry grew to 500,000.

But Kailee’s biological family had not stepped forward. “When I first met with the governor of Hunan province (where through DNA testing doctors felt the Wells had the best chance of finding her biological family or a perfect match), he asked me what I wanted,” Linda said. “I said, ‘I want to find Kailee’s birth relatives.’”

“Everyone was aghast,” she said, “It was explained to me that there was a financial penalty and jail time for abandoning a child, and so the family would never come forward. Without thinking I said, ‘My family will pay the penalty and I will do the jail time.'”

She continued, “Cell phones went crazy. Everyone was on one and the place was buzzing. Finally the governor said to me, ‘We will waive the penalty and the jail time. We will announce that the family will not be punished.’”

“But,” said Linda, “China is huge. We weren’t sure of Kailee’s actual birth date, or even the place she might be from. Who knows if her family heard of our plight or if they did, did they realize they were the ones we were looking for?”

By now, the Wells family had moved to Milwaukee so Kailee could be near Children’s Hospital and Dr. Margolis. She was being kept alive only with the aid of near-constant transfusions of blood and platelets. Her family was terrified that an infection — even something as tiny as a cold — would end her life. They decided to return to China one last time.

“Everyone planned to go this time,” Linda said. “Owen, my other children, Kailee. We had spent everything we had and were running out of options. This was to be our one last push.”

Twenty-four hours before they were to travel, Linda was at the hospital getting last-minute transfusions and platelets for Kailee so she would be able to travel.

Dr. Margolis called them into a conference room. Linda presumed the worst. What he said was, “The Chinese may have found a perfect match.”

Read Part 2 of Two Worlds, One Child

By Jamie Simons for PeterGreenberg.com.

For more information on bone marrow drives, check out www.marrow.org or kaileegetwells.com.

Read the story that started the Grateful Traveler seriesAn Eskimo Showed Me the Way. Check out some highlights from the rest of the series.