This is Chase's story (written by his mom, Christie).
At 28 weeks' gestation I noticed decreased movement. My doctors dismissed my concerns about movement, stating that I was stressed about my daughter's (Tyler) passing 13 months prior and expecting too much too soon.
At 31 weeks they did an ultrasound to learn that Chase had an enlarged liver and spleen, just as Tyler had. He also ascites and fluid on his brain and around his heart. They told us we could continue the pregnancy and deliver a stillborn, induce labor and deliver a stillborn, or have a C-section and maybe see if it was something else.
Chase was delivered at 32 weeks and was dependent on 100% oxygen and ventilator. It took two days for the hematologist to complete a bone biopsy to compare his results to his sister's. The doctors again told us there was no medication and no treatment for this disease and all we could do was wait for him to go into heart failure.
We had Chase taken off life support at two days old. He died in our arms. His 3 1/2yr old sister, Stephanie, told us "It's ok mom, Tyler just needed someone to play with".
Again, we went through all the genetic counseling and was told (again) that it was just a rare virus, and they did not know why it happened twice in 14 months to us.
Five days after Chase's funeral, I found the Histiocytosis Association. I became actively involved in the hope that no other families would have to go through what we went through, losing both Chase and Tyler.
If you'd like to make a donation to this event in honor of Chase, please click on the donate button below. Thank you.