One of a parent’s greatest fears is hearing about a life-threatening diagnosis for their child. Not understanding the diagnosis adds to the anxiety.
“Part of being a pediatric heart surgeon is having difficult conversations with parents,” explains Dr. David Morales, M.D., Director of Congenital Heart Surgery, at Cincinnati Children’s.
“We sit down with parents and tell them that their child has hypoplastic left heart syndrome, and they sit there in shock having no idea what we said or what hypoplastic left heart syndrome is,” states Dr. Ryan Moore, M.D., pediatric cardiologist and director of Cincinnati Children’s Heart Institute Digital Media and 3D Modeling Program. “Then we say their child needs a Norwood Repair procedure, and the parents are still sitting there in shock because now they don’t know what is wrong with their child or what needs to happen to fix the problem.”
To help ease the parents’ and patients’ understandable fears, Drs. Moore and Morales, along with Cincinnati Children’s Media Lab, began developing interactive technology to better explain the diagnosis and recommended medical procedures.
“The biggest things we are focusing on are digital experience technologies like mobile apps, animations, gaming, virtual reality and augmented reality,” says Dr. Moore. “It moves us from the Information Age with handouts and websites to the Experience Age with apps and virtual reality. Now, parents aren’t just reading text on a website about a heart condition, but they can pull up a 3D model of their child’s heart on their phone or watch an animation that details the surgery their child will have.”
One of the motivations for creating these types of digital tools is when Dr. Moore recently found himself in the unfortunate position of most of his patients’ families.
“A year ago, my wife had a brain tumor and had to have it removed,” remembers Dr. Moore. “When I first learned about it in the emergency department, I was in a complete state of shock and couldn’t even listen to the neurosurgeon. All I could think about was if she was going to be okay. In the middle of all of these emotions and thoughts, we were asked to sign the surgical consent while everything was a blur, as we were still processing the news that my wife has a brain tumor.
“For the first time, at that moment, I realized what it was like to be a family member in shock. I knew that we had to do something to improve a family’s understanding of a complex procedure during that state of shock and concern. We want to boost confidence, and I figured leveraging digital media would be the best tool to help bring hope and understanding.”
One such development from Dr. Moore and the Media Lab team at Cincinnati Children’s is a mobile app called Heartpedia. This app shows a variety of interactive heart models that doctors can use to educate parents on the specifics of their child’s heart condition and the way they intend to fix it. The team has also developed digital animations walking the viewer through a cardiac procedure from beginning to end.
“We have a very unique resource at Cincinnati Children’s with the Media Lab being essentially an animation studio in the hospital,” explains Dr. Moore. The team consists of three very talented digital artists, Jeff Cimprich, Matt Nelson, and Cat Musgrove, working alongside two physician leaders, Dr. Ken Tegtmeyer and Dr. Moore, to create digital animation tools for patients, doctors and nurses. Dr. Morales works closely with the Media Lab to develop the surgical animations in perfectly accurate detail.
“We used to rely on these two-dimensional drawings with arrows when we were explaining a surgery, and it was good, but it was still very hard for patients to visualize,” explains Dr. Morales. “Now they can watch the animations of their child’s operation and really see what we’re doing. Parents have shared with us that these demonstrations make them feel more comfortable and informed.
“Imagine carrying a baby for nine months and the day your baby is born, a doctor surprises you and tells you that your new baby needs open-heart surgery,” Dr. Morales continues. “When I tell families this, I usually just see blank stares looking back at me. Now I can show them a digital 3D reconstruction of their baby’s heart lesion that they can interact with as well as an animation of the procedure their baby will undergo. Even with this, I still see blank stares at times. The great thing is that they now can have that 3D digital interactive model and the animation so they can absorb the information on their own time. Also, every time a friend or family member asks what is wrong with the baby, they will have an answer because they can show them.” Heartpedia can be downloaded for free for Android or iPhone and can be right in the parents’ pocket.
As the child patient grows up, Cincinnati Children’s hopes that with the new apps they are developing, these children will fully understand what procedures they went through, and what needs to be done to maintain good heart health.
“We believe health literacy is a key component for the congenital heart disease population because the heart conditions are so complex to explain,” says Dr. Moore. “If a parent doesn’t understand the diagnosis, then the child won’t understand it either. When that kid becomes an adult, they might not think they need any further
treatment or follow up because they thought the surgery they got when they were a baby or a child ‘fixed’ them. Unfortunately, that’s not typically the case, and they need specialized adult congenital heart care to make sure no new problems develop.
“With the advances in digital media and technology, it has become easier to explain complex healthcare topics. We never want this to be a topic that they don’t want to talk about or think about because it’s too complicated to explain or understand.”
Cincinnati Children’s is not only using digital technology to explain to parents about a procedure, but their surgeons are also using it to plan out an operation. The newest advancement in surgical planning is with virtual reality – a fully immersive digital environment that allows the user to directly interact with three-dimensional objects, like the heart, to plan out a surgery. Cincinnati Children’s is one of the first pediatric centers to do such planning.
“We have done some very complex congenital heart surgeries with virtual reality reconstructions of these children’s hearts,” says Dr. Morales. “It was unclear that these surgeries could be done, but we planned them out and tested them in the virtual space weeks before any incision had even been made.”
Dr. Morales is able to experiment and test out placement of life-saving medical devices like the Total Artificial Heart in a virtual surgical environment to find the best method unique to each individual patient. Using data and images from CT and MRI scans, Cincinnati Children’s can create a virtual replica of each patient.
“I put on the VR goggles and I can see the recreation of a child’s heart, their lungs and their ribs,” explains Dr. Morales. “I can then start putting a device into their heart to be sure everything would work out. If it doesn’t, we can change devices or plan a different way of inserting the device. It is incredible to be able to plan surgeries like this ahead of time. The next phase will be to plan out complex congenital heart repairs to improve outcomes.”
In addition to VR surgical planning, Dr. Moore and Dr. Morales are continuing work with Cincinnati Children’s Center for Simulation and Research Virtual Reality team to bring congenital heart education in a new VR app called HeartpediaVR directly to patients and families as well as healthcare providers and students. That team, led by Dr. Gary Geis, Aimee Gardner and Dr. Moore, also includes developers Bradley Cruse, David Davis, and Matt NeCamp, who use their unique talents to work like a video game company built within a children’s hospital. The technology allows children and families to interact with heart conditions in 3D at a level they have not been able to before to provide stronger understanding of complex conditions and treatments.
Cincinnati Children’s is located at 3333 Burnet Ave., Cincinnati, OH 45229. For more information, call 513.636.4200 or visit cincinnatichildrens.org/heart