Savannah is my spunky, vivacious, beautiful 4-year-old. With regard to her heart, we’re in a holding pattern. Following her second surgery in Boston, she’s had a long, slow multi-year recovery that is led us to this point. Savannah’s mitral valve was the primary reason for her second surgery, and a residual VSD prolonged her immediate post-operative recovery. Her mitral valve will require replacement at some point but for now, the regurgitation is tolerable. Now Savannah is at home and growing.
Our biggest medical concerns for Savannah right now are her immune system and her overall development. Starting this her immune system, we knew that she’d have immune system issues before she was born. By not having a spleen, there are certain known and well-documented vulnerabilities associated with being asplenic. This knowledge led us to the immunology department at Cinncinati Children’s Hospital Medica Center. There we were connected with Dr. Andrew Lindsley. His testing has shown more immune suppression than we expected.
These immune system issues have prompted us to take extremely strict precautions throughout this intense cold and flu season. We’ve been near total lockdown at times. I still have to go to work, but even there I am extremely cautious. We only take Savannah to medical appointments, and there she remains inside a plastic bubble to keep her as isolated as possible.
With regard to her development delays, Savannah has significant global delays. Most notable are her speech and feeding issues. Savannah has weekly Speech therapy through our local school system as well as an OT through school. Additionally, we take Savannah to Feeding Friends in Indianapolis to get help with her severe feeding issues. In coming weeks, our hope is to share more about Savannah’s journey in order to help other families who are navigating life with congenital heart disease and other pediatric abnormalities.