Too Big a Heart
Shortly after Mailia’s Eisenmenger’s diagnosis in 1998, we started a search to find a possible cure. Our path led us to a doctor from Brazil who had gained notoriety for a heart trimming procedure he had developed called the “Batista Procedure.”
Time Magazine featured an article called Too Big a Heart about this pioneer of medicine, Dr. Randas Batista. We devoured it – especially the last page of the article, where we learned that this doctor had taken Eisenmenger’s treatment quite to heart.
Through the incredible technology of the internet we found Dr. Randas Batista and sent him an e-mail to introduce Mailia and her situation. He responded immediately, saying that he would be attending a cardiology conference in Tucson, Arizona and inviting us to meet with him personally. After making arrangements with the Cardiology group, I made reservations to fly to Tucson to the opulent Westin La Paloma Resort and Spa where the conference was being held.
Meeting Dr. Batista
Heart doctors from across the United States, as well as a few foreign doctors, were present. After arriving, I searched for Dr. Batista in this dazzling sea of knowledge. Glancing down the hall, I saw a tall man in a light colored suit walking with a limp and a cane. Dr. Batista greeted me with a cordial handshake and explained his limp was from having recently fallen off a horse while working cattle on his ranch. He had made it, though, and was very much looking forward to the conference.
As we sat together in the large conference room, I felt quite out of place; what held me on my seat was my mission to discover if – and how – Dr. Batista could someday help Mailia.
After several doctor’s took the stage to give their presentations, one by one, it then became Dr. Batista’s turn. This humble man got up on stage and introduced himself, then unveiled a very simple PowerPoint presentation about the procedure he had developed. It was a beautiful story … it was his story. I remember sitting there thinking, “My God, thank you. There is a reason for my being here. There is a reason for his being here.”
When Randas finished, the audience gave him a standing ovation and I had tears in my eyes. I felt an immense sense of gratitude … and a strong sense of hope for our daughter.
Banding the Pulmonary Artery – Making Sense of It
After the conference, I had an opportunity to sit down with Dr. Batista and discuss the logic surrounding his beliefs on banding the pulmonary artery in order to reverse the effects of Eisenmenger’s on Mailia. He used a piece of paper to sketch a flow chart of various pressures to show me the mechanics of how this would work. It went way over my head, but as a blue collar worker – having been a Pipefitter and welder by trade – I could grasp the analogy of choking the high flow of blood to Mailia’s lungs, thereby allowing the tiny blood vessels in her lower pulmonary bed or vasculature, a chance to remodel and heal.
It made sense. I remember asking him – still a little apprehensive about this method – what he would do if Mailia were his daughter. He said quickly, without batting an eye, ”I would band her!” Period. That was good enough for me. I left the next day, with the hope that he would be able to return to the U.S. and perform this procedure on Mailia. He agreed to do this and through offering his help, he inspired us to do our part.
Our Journey Turns Dark
Then our journey took a dark turn. We spoke with Mailia’s cardiologist about the meeting with Dr. Batista and the procedure he recommended. His response? It would not work, and had never been done.
We opted for a second opinion and found another cardiologist in Portland, Oregon who was at least open to listening to this possibility. However, he could not offer us his hospital or the resources required to conduct this procedure with a doctor from Brazil leading the charge.
We began to contact many other medical institutions and heart surgeons. From Boston to Miami, Cleveland to Houston, from L.A. to Kentucky … and Tennessee. All these experts in their fields wanted to know: why did she have Eisenmenger’s and why was her defect not corrected at birth? Why? Because it was missed by the best afforded us at Providence Medical Center in Seattle where Mailia was born.
The experts’ logic for not being able to help Mailia – Eisenmenger’s has no known cure other than palliative treatments. Short of a double lung and heart transplant, there was nothing else they could or would do. A Brazilian heart surgeon coming to their hospital to perform this “unproven procedure” was not going to happen because of the “medical and legal issues.”
We were incredibly disappointed: I wrote in tears to Randas telling him that – at least here in the U.S. – no one was willing to help us. I kept telling myself it was for a reason and that we needed to accept and trust … not push the issue any further.
Randas told us not to worry. He was going to work on his foundation and finance the building of his own hospital in Brazil and then HE WOULD HELP HER!
Believing in a Miracle
We were blessed by his words and began to believe that a miracle would come to pass for our daughter. We had no way of knowing the cursed “how’s” this would manifest in our lives – we just had faith and trusted that we would be shown the right way at the right time.
In the interim, Dr. Batista has traveled the world performing this procedure successfully on many Eisenmenger’s patients and has also spent a year in the jungle playing curandero. He has brought so much international attention to himself, through his incredible gift of being so very conscious in his work and vision, that he most recently attracted financing from a large Japanese holding named Tokushukai, one of the biggest health corporations in the world. They offered to help finance the construction of his hospital in Brazil.
The hospital will be constructed using Japanese architecture and will resemble a Japanese Temple. It will be approximately 54,000 square feet and will include the possibility of constructing an adjacent hotel for patients’ families and visitors. It will be the largest cardiac center in all of Latin America.
So, while we wait for the construction of this incredible facility, we have set the wheels in motion to find a way to finance and bring about Mailia's future therapies. As we live in the hope that hers will be one of the first documented cases of complete reversal of Eisenmenger’s, we continue to champion and give voice to the teachings, inspiration and actions of one curandero … Dr. Randas Vilela Batista.
Update May 16, 2012...Video interview between Dr. Joel Dunning and Dr. Randas Batista on the CardioThoracic Surgery Network
Click the photo to be taken to the CTS site for this video
|Mailía Nizhoni Goforth | 1130 N. Cherry Drive Pasco, WA 99301 | (509) 266-4493 | e-mail us | design by Thomas Granbois