Hayden's illness has been long-lasting and mysterious. At first, Hayden was experiencing frequent ear and urinary tract infections. While his pediatrician attempted treat his recurring infections, he found that Hayden was also suffering from anemia (a decrease in red blood cells or hemoglobin), as well as a thickened bladder wall. Though iron supplementation was initiated, Hayden's anemia persisted. Over time, Hayden's symptoms became more peculiar. His abdomen became distended, he had a decreased appetite, and he could not gain weight. Hayden was also in a lot of pain; he would wake up at night screaming in pain, and his legs hurt him so badly that he was unwilling to walk. He was still suffering from urinary tract infections, and a cyst on his kidney was also discovered. All of these symptoms, along with the anemia and recurrent infections, prompted his pediatrician to order more tests in an attempt to find the cause of Hayden's illness. He was referred to Children's Hospital in D.C. for further testing (such as CT scans, x-rays, comprehensive blood work, etc.).
Hayden was eventually admitted to Children's Hospital in D.C. after his pediatrician found his anemia to be worsening. In fact, Hayden was no longer only experiencing decreased levels of healthy red blood cells; now all types of blood cells were deficient and continued to deplete at an alarming rate despite blood transfusions. Test after test was performed with no answers. A team of physicians from Children's Hospital, as well as from facilities from around the country, are collaborating to find the cause of Hayden's mysterious illness so that they can help this courageous boy get back to being a normal 3 year old again.
The following was written by the team of physicians at Children's Hospital caring for Hayden in order to help everyone understand his condition a little better: Hayden is a delightful 3 year old who we met at Children's National Medical Center in May 2010. Hayden was initially found to have both anemia and a low white blood cell count. Hayden has had countless tests to determine the cause for this, including several invasive procedures. He has undergone 3 separate bone marrow aspirates and biopsies as well as a colonoscopy and endoscopy. He has been admitted to the Children's multiple times this summer. Over the past 2 months Hayden's anemia has gotten worse, requiring multiple red blood cell transfusions. He also developed low platelet counts and has required platelet transfusions as well. His white blood cell count has remained low. Hayden remains a bit of a mystery, because even with extensive testing and the input of many clinicians, the exact diagnosis is not yet clear. Hayden appears to have a type of bone marrow failure syndrome, most similar to an entity called Aplastic Anemia. He will soon begin immunosuppressive therapy as treatment for this bone marrow failure, and his care team are very hopeful that we will see improvement in his blood counts over the next 3-6 months. It is clear that this will be a long haul for Hayden and his family. In fact, bone marrow transplantation remains a treatment option in the future if we are not able to achieve our goal with immunosuppressive therapy. Hayden is surrounded by a wonderful and loving family, and a dedicated team of doctors and nurses, who are prepared to do whatever it takes to make Hayden well.