“Noelle was born on October 28th, 2011. What was supposed to be a day to be celebrated, welcoming the birth of our 4th child, the completion of our family, quickly turned into terror. Noelle was bleeding uncontrollably from her umbilical cord, and the doctors couldn't get the bleeding to stop. Her liver, spleen, and heart were all enlarged-something that was missed on every ultrasound we had. We were told to brace ourselves for the worst and gather any family and friends who wanted to meet her. We had her baptized within hours of her birth and had our children, close family and friends come to meet her.
The doctors were perplexed and could not understand what was going on with our girl. Noelle proved to be a fighter, and survived her first day, after several blood transfusions. These transfusions continued…daily. She was transferred to Lurie Children's Hospital at one week old, where a bone marrow biopsy ultimately confirmed that she had hemophagocytic lymphohistiocytosis (HLH). She was diagnosed at 3 weeks and immediately began chemotherapy, steroids, and immunosuppressants. From that point forward, we began the horrifying nightmare that no child should have to endure, and no parent should have to witness.
Our Noelle fought hard for 2 more weeks but ultimately succumbed to HLH. She developed an avalanche of catastrophic complications ranging from sepsis, to pulmonary hemorrhages, to finally a catastrophic grade 4 brain bleed. She died in our arms, surrounded by loving family on December 6, 2011 (St. Nicholas Day), on what was her actual due date. Noelle survived for 39 days. We cherished every single moment of the time we were blessed to have with her and will be forever grateful for the impact this beautiful little girl left on each of us.
HLH is a rare, life-threatening condition. With HLH, the body's immune system does not work normally. Certain white blood cells, attack the other blood cells in the body. These abnormal blood cells collect in the spleen and liver, causing these organs to enlarge. HLH can be acquired, meaning it was triggered by a virus, cancer or other; or it can be genetic. The treatment typically consists of chemotherapy, immunotherapy, steroids, antibiotics, antivirals, and eventually a hematopoietic (blood or bone marrow) stem cell transplant in order to be cured.
We pray every day that no other child or family has to go through this kind of loss.”
Noelle was diagnosed at 3 weeks old with Hemophagocytic Lymphohistiocytosis (HLH). She passed at only 39 days old.