EP Diplomacy: My Experiences With the Healing the Children Organization

This article features information about the partnership between Advocate Good Shepherd Hospital and the Illinois/Indiana chapter of Healing the Children, a non-profit, all volunteer organization. Healing the Children, which has 13 other chapters nationwide and many international partners, has been providing medical care to children in need for over 30 years.

Since 2007, our EP laboratory at Advocate Good Shepherd Hospital in Barrington, Illinois has had a relationship with Healing the Children (HTC), a non-profit organization dedicated to uniting needy children with providers who donate time and services to address their healthcare needs. Children from the U.S. and around the world have benefitted from this care, and we are fortunate to be able to provide EP services to these kids.

The task of bringing children from another country is quite daunting and involves obtaining travel/medical visas, arranging for foster families, organizing airline transportation (including volunteer escorts for the children), and finally, making hospital and procedural arrangements. Jeff Degner, director of the Illinois/Indiana branch of Healing the Children, is in contact with non-profit health organizations in other countries who prioritize the children’s needs and help to coordinate their arrival to the U.S. 

Good Shepherd is primarily an adult EP laboratory; therefore, we take on older, post-pubertal children. All of these patients come from areas where EP services are unavailable either from a logistical or financial perspective. For example, our first patient in 2007 was a 17-year-old from Peru with debilitating atrial tachycardia. There were no electrophysiologic resources available to him locally; he was treated with medications and told to curtail his activities. He was unable to participate in the sports he enjoyed or eat the foods he liked, and was only able to get through his day with the aid of high doses of beta-blockers. His ablation freed him from medications and opened up a part of his world that he felt he would never see again. His reaction to the procedure was truly humbling. 

We recently had the pleasure of extending care to three teenagers from El Salvador. These teenagers all had symptomatic Wolff-Parkinson-White syndrome and had been on medications for most of their lives. One 15-year-old had been on amiodarone since she was able to swallow a tablet. Dietary and activity restrictions were in place for most of their lives for fear of triggering arrhythmias. 

One can imagine how frightening it would be to agree to have heart surgery in a foreign land where you don’t speak the language, yet these kids’ parents jumped at the opportunity to have them sent, alone, to undergo these procedures. The foster families, however, do a tremendous job of welcoming and accommodating the children and attending to their physical as well as emotional needs. The parents are in communication with their children either by phone or other electronic means. After a week of acclimation to their foster homes, they undergo their ablations. Typically, the children stay several weeks after the procedure to recover, see a little of the U.S., “test” their new activity level and obtain follow-up prior to their trip back home. 

Healthcare arrangements are coordinated by a team of hospital administrators, nurses and physicians. PALS-certified personnel are present for the cases and units are alerted to the possibility of an admission should it be required. The cost of this care is underwritten by Advocate Good Shepherd Hospital, and I donate my time and services. 

The EP laboratory setup was the same for all three children. The procedures were done with conscious sedation, and sheaths and catheters were placed via both femoral veins. Three-dimensional mapping and ICE imaging were used to help reduce radiation exposure (fluoroscopy times averaged eight minutes). The pathways were ablated via a transseptal approach using radiofrequency energy. Isoproterenol and adenosine were used during post-ablation testing. All were discharged the same day post procedure. 

The follow-up visit was joyous and emotional. Many thanks went around and everyone involved benefitted from seeing how these kids’ lives had changed, even in the short time since their procedures. I recall a patient last year, a 16-year-old male who hadn’t been able to participate in the sports he so loved. He tried, but was readily reminded of his arrhythmia. He came to us with his head bowed and an expressionless look on his face. Shortly after his ablation, his host family took him zip-lining, an activity he had never done, and would have never dared before. The huge smile on his face in the picture taken while he was whizzing down the line said it all. 

These stories are probably nothing new to electrophysiologists who perform these procedures, but these cases take on a new meaning when performed in this context. Providing these services takes me back to the reason why I chose this vocation. 

Although we have been participating in this program for the last seven years, the list of children needing these services has grown consistently, and it is estimated that 40 or more children are waiting to be considered. We hope to be able to take them on soon. In the meantime, they continue on medications and practice lifestyle adjustments knowing that their time too, will come.

Click here for more information on the IL/IN chapter of Healing the Children

Emails can be sent to: hope@htc-il.org

The National Healing the Children website provides access to all chapters.