When we first discovered that we were expecting our first child, my wife and I were beyond excited. As we journeyed through the normal routine of fixing up the nursery, stocking up on diapers and wipes, and getting ready for the new baby, we had no idea the struggle that awaited our baby girl. At our 20 week ultrasound, our daughter was diagnosed with a severe congenital heart defect known as Hypoplastic Left Heart Syndrome.
Our heart warrior will turn 6 this year, and she has already undergone multiple, long-term stays in the hospital for three complicated open heart surgeries, several cardiac catheterizations, and other illnesses associated with her condition. While having a baby in the hospital is emotionally challenging for the parents, the emotional toll is exacerbated once the baby grows. Words cannot express how helpless you feel as a parent as you try to explain to your toddler or school-age child why they cannot go home. This feeling of helplessness is heightened when coupled with the fact the discharge decision is often tied to milestones rather than time. Such an abstract idea is nearly impossible for a young child to grasp, especially when dealing with all of the physical and emotional trauma that accompanies a long hospital stay.
During our most recent hospital stay for complications due to the flu, our family was presented with the Princess Get Well Map through the Child Life folks at our local children’s hospital. While we did not get the opportunity to truly utilize the map during this short stay, we immediately recognized its value and wished the maps were around during our daughter’s previous, longer stays. While we certainly do not look forward to any more extended hospital stays for our heart warrior, we know they are an inevitable fact of her life and are thankful the Get Well Maps will be there for our daughter. We are proud to be supporters of Child Inspired Healthcare Get Well Maps and pray these find their way to every Children’s Hospital in the country!