Half of all Make-A-Wish children, in some way or another, come through Central Florida, whether their wish is going to Disney World, Sea World, or jetting off on a cruise. More than 15,000 wishes are granted each year to children with life-threatening medical conditions, thanks to the Make-A-Wish Foundation. I see a lot of Make-A-Wish families – about a dozen each year from all over the world. As a pediatric critical care physician at Arnold Palmer Hospital for Children, the only Level One Trauma Center in the Orlando area, this is where they end up if something unexpected happens when they are traveling.
Witnessing the will of these families to honor their children’s hopes and dreams inspired me to become a medical advisor for the local Make-A-Wish chapter and part of the advisory committee at the national level. I truly have a passion to ensure these children are safe to travel and have all they need to enjoy their Wish trip. That includes patients who need to visit my facility for care on a Wish experience.
While incoming Wish families usually pack a printout of their medications, they very rarely have the information I need – the child’s medical images. Medical imaging plays a key role in how we determine treatment, as imaging studies are vital to truly understanding the patient’s condition and whether something is progressing or staying the same. For example, if a child comes to us with a brain tumor, prior images would show us if the size of the tumor has changed in any way.
On the rare occasion a family does bring images on the trip, they’re often on CDs that are corrupt or on a system that is hard to navigate. While we certainly don’t like constantly putting children through radiation, if we can’t see their medical images, it’s often necessary. Other times, we have had to call their primary care facility, often at inopportune times, and wait for the images to be delivered via courier – with our whole care team on eggshells, knowing the patient is in critical condition.
It’s really tough to see these families’ magic being stripped away, and it’s even harder for them to deal with new physicians and new medical care teams that do not know their sick child. As a mother, that bothers me the most. Further, when we can’t get the medical files and diagnostic imaging reports we need, or if the patient is really sick, the child may not even be able to fulfill the Wish trip at all.
Fortunately, advances in medical imaging technology have changed the game in treating Make-A-Wish patients. Last November, we launched a dedicated pilot program at Arnold Palmer Hospital for Children in conjunction with Nuance to offer these families cloud-based medical image sharing as part of their pre-trip planning. With this program, families and pediatric care teams can upload their child’s medical images to the cloud, allowing us to access them if needed – ultimately improving our ability to treat the patient and get them back to their wish.
I want to provide a better experience for these Wish families, and if the inability to get medical information ruins one child’s trip – that’s one too many. Nuance’s Make-A-Wish program is a melding of technology and humanitarian charity that, together, facilitates continuity of care, eases the minds of Wish families and perpetuates the mission of Make-A-Wish to enrich the human experience with hope, strength and joy.
To help families traveling beyond Orlando, this program has plans to expand to popular Wish destinations across the country.