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Claire’s Story

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When Claire was about 6 weeks old we had to take her to the ER because she was having a hard time breathing and was looking very pale. When she got there, Claire "coded" and doctors frantically tried to figure out what was wrong. First, they thought she had a bad heart, then internal bleeding, finally, they realized that her problem was her bone marrow/blood. She had very little of it. A couple of hospitals and ambulance rides later we ended up in the infant ICU at Children’s Hospital. After many tests and several transfusions they diagnosed Claire with a very rare condition called Diamond Blackfan Anemia (DBA). Basically, she doesn't create her own red blood cells. So a little Hematology 101. Basically your bone marrow creates 3 types of blood cells. -Platelets-which cause the blood to clot when you get cut. -White blood cells-which help you fight disease -Red Blood Cells (RBC's) which carry oxygen to the body. The way we measure the amount of blood in Claires system is to get a Hematocrit count. A healthy persons Hematocrit level is about 40-45. A patient undergoing chemo and radiation, and therefore has a very low Hematocrit level, could have a level in the teens. When we initially took Claire to the hospital, her Hematocrit was at 6. The doctors are amazed she survived. Typically, the doctors will transfuse Claire when her Hematocrit drops as low as 25. Claires Platelets are fine. Her White Blood Count fluctuates more than it should and is typically lower than normal (a condition called neutropenia). This is the reason we try to minimize her risk of exposure to germs or disease, (thus her (and Debbies) infrequent church attendance). There are two different treatments for DBA. 1)Chronic (ongoing) transfusion therapy-a patient gets transfusions once a month or as dictated by her blood levels, or 2) steroid treatment where the patient is given prednisone in hopes that that will increase/initiate RBC production. Most people use a combination of both. They take the steroid to augment their natural blood production, thereby increasing the amount of time between transfusions; some respond to the steroid well enough that they only have transfusions every few years or more. We have tried two rounds of steroids but Claire didn't respond to them at all. So for now Claire is transfusion dependent. Although Transfusion therapy can be a viable longer term, there are other side effects that make it quite difficult. As people produce RBC's they recycle iron in their system. Since Claire doesn't produce RBC's the iron builds up. We now monitor Claire’s Ferritin level which measures the amount of iron in her system. When that level gets consistently over 1000 we will start a procedure called chelation. Chelation is a daily injection/IV of a chemical that binds itself to the iron in your system and removes it. This process takes quite a bit of time, between 9-15 hours, so is usually done while the patient sleeps. Claire also has had a couple reactions to her transfusions recently. The doctors are not sure what is causing the reactions, but they are taking steps to ensure that those incidents are minimized. In August, Claire underwent an MRI to help understand some developmental delays her doctors and therapists were noticing. They discovered the myelin pattern development in her brain was delayed. Myelin is the sheath that covers the nerves in the brain and spine. Much like insulation on an electrical wire, the myelin improves the signal as it travels down the nerve. This myelin facilitates the brains ability to communicate and control the rest of the body. The good news is the judging by recent progress Claire has made, we think her development, although delayed, is improving. That is a good sign. The biggest challenge with Claire is dealing with the uncertainty. The uncertainty of her diagnosis. The uncertainty of what the treatment would be like. The uncertainty of what the future holds. But we are continually and tremendously grateful for the wonderful joy and happiness that Claire brings to us daily and the outpouring of love and support we continuously receive from family and friends.