Biopsies and blood tests were completed, and Zainab Mughal's rare mutation of blood explained, her parents coping with the sudden complication in her daughter's cancer fight. For the two-year-old child to survive, one would need something over which they had absolutely no control: the kindness of strangers.
Zainab, who lives in Florida in the US, was diagnosed in October with a neuroblastoma, an aggressive cancer that usually occurs in children. Doctors said the tumor was growing inside Zainab's abdomen for almost half of his life. Fighting it would require two bone marrow transplants and a series of transfusions to replenish their blood supply, as chemotherapy reduces the tumor to nothing, doctors said.
"The results have come and the results have been very bad," said his father, Raheel Mughal, in a video. "We were all crying, it was the worst thing we expected."
There was another major complication: Mughal and his wife were tested to see if they were compatible blood donors. They were not. A parade of family and friends entered the hospital to be bitten by needles. No luck.
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"And that's when it became more of an alert," Mughal said.
Now the two-year-old child is at the center of a worldwide quest to find donors with the same extremely rare blood that can help her, a battle dependent on statistics and probabilities that her parents have become very familiar with.
The people most likely to have adequate blood are descendants of Pakistani, Indian or Iranian, according to OneBlood, the nonprofit blood center that leads the research. But even in these populations, less than 4% of people have blood that Zainab's body will not reject.
Most people never have to deal with the often hidden world of rare blood transfusions.
There are about 360 different antigens on the surface of red blood cells, but the body of most people will not respond negatively to these markers, said Frieda Bright, OneBlood's reference laboratory manager. For most people, getting the right kind of blood is all that matters.
But a small percentage of people – including Zainab – produce antibodies in the presence or absence of certain antigens, causing the body to reject the blood. But these people still get involved in accidents or suffer from diseases like everyone else, so there is a network of specialized blood banks rare in blood, keeping a database of sparse combinations of antibodies and transporting them across the country to patients in need.
That's a big part of Bright's work. She is part of a team that works 24 hours a day, 365 days a year, to identify and catalog rare blood units and, where possible, respond to requests. Still, Zainab's case is so rare that Bright – who has been in the industry for 20 years – had to go to a book to learn more about it.
OneBlood is now working with the American Rare Donor Program, an organization that connects donors to needy patients around the world. For Zainab, three compatible donors were found – one lives in London and the other two in the United States.
This is a promising sign, but it is not enough. The rules limit how often donors can give blood. Zainab doctors would have to allocate up to 10 donors to ensure that whenever Zainab needs a blood transfusion, she can get it.
It is the missing piece of a treatment plan that doctors say is already reducing Zainab's tumor.
Over 1,000 people of Iranian, Indian or Pakistani descent have donated blood in an attempt to see if they are compatible with Zainab.
But his parents and a team of experts realize that it is not over until Zainab leaves the hospital without cancer. So they launched an awareness campaign using the best weapons they have: Zainab's story and an endless stream of adorable – occasionally toothless – photos of babies. One shows the child wearing a birthday cap and a pink polka dot dress, another shows her posing for a photo with a cream colored dress and flowers and ribbons in her hair. A third, post-diagnosis, shows huge brown eyes under a bald head.
She is still too young to fully understand the gravity of what she needs or the enormous odds against her. But his father hopes to one day explain to him how a group of people they did not know helped save his life.
"It's a humble request, and I request it from my heart," Mughal said in a video produced by OneBlood. "My daughter's life depends a lot on the blood …
"What you are doing to save a human life, to save my daughter's life, is incredible. Once my daughter grows up, I will remind her that the effort was made for you to save your life."