Meet Hayley, a girl who overcame a rare blood disorder

Hayley comp crop 2011When Melana was pregnant with her first child, she worried a lot. She had vivid nightmares that reflected the typical fears of many first-time parents. At one of her last pre-natal visits, her stress tests revealed that the baby’s heart rate was dropping, so her doctors ordered an emergency Cesarean section. Hayley was born on May 31, 2000, weighing just 4 pounds, 10 ounces. Her parents were overjoyed to count ten fingers and ten toes and welcome her to the family.Hayley-Quote

But as Melana took Hayley to doctor visits and play groups, she couldn’t get over the fact that Hayley’s skin did not have the pinkish hue that most other babies her age had. Melana’s doctors assured her that nothing was wrong with Hayley, but her instincts told her something else. She took Hayley to urgent care where they drew blood for tests. The results of her blood iron level tests were so low that the doctors thought the lab had made a mistake. When the second results were also dangerously low, the emergency physicians called an ambulance to have Hayley rushed to Phoenix Children’s Hospital for an emergency blood transfusion.

During a process of elimination, doctors determined that Hayley suffers from Diamond Blackfan Anemia, a condition where her bone marrow does not produce red blood cells. Hayley did not respond to the steroid treatment that helps most patients with this disorder, so she was placed on chronic blood transfusion therapy. “We rely on the kindness of strangers to keep our daughter playing, jumping and laughing,” Melana says. “No other medical treatment will do that.”

Hayley received nearly 90 blood transfusions before her doctors determined that she needed to have a bone marrow transplant. Her transplant took place in November 2007 and Hayley needed additional red cell and platelet transfusions following the procedure. While avoiding public contact to prevent complications and infection, the family found creative ways to live as normally as possible while still giving Hayley the best chance for recovery.

Hayley-pop

Even if she no longer relies on monthly transfusions, her parents are especially grateful to blood donors who take the time to give regularly. “They are true heroes,” Melana said. “Their generosity really restores my faith in mankind.”
Hayley lives with her parents and brother.