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| Mirlande Fortune--Photo by John Carroll |
This post is on Willie Fortune and it is one of four parts. In these posts, I describe Willie's medical saga from start to finish.
Willie was Children's Hospital of Illinois poster boy until he wasn't. And he about lost his life to medical abandonment.
I have included personal reflections, Journal Star articles, letters to the Diocese, and Maria's excellent oped article regarding Willie.
Pictured above is Willie Fortune's mom in Haiti. What right did OSF in Peoria have to deny care to her son?
Traditionally, hospitals have deserved respect. They employ many people in their areas and they are places where people are born and where they die. Medical centers all over the United States, such as OSF, have significant power.
The real question in 2019 is: Can big medical centers be penalized when they don't treat patients with dignity? Powerful medical centers with powerful allies are able to act with impunity. Willie and other Haitian Hearts patients were abandoned by OSF but OSF suffered no consequences.
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In 1998, while examining patients one day in the clinic at Hopital Lumiere in southern Haiti, a smiling 10-year-old boy came into my office to be checked. His name was Willie Fortune. He and his mother had made the six-hour trip from their home in the capital over the bumpy mountainous roads to this rural hospital. Willie had a great smile and an engaging personality. However, one could easily see that his lips were blue and his fingernails were clubbed which indicated that his body had not been getting enough oxygen for many years.
Willie's mom told me that he was unable to run while playing with other kids or go to school because he could not keep up. Their home was near Canape Vert in Port-au-Prince, and like most of their neighbors, they had no running water or electricity. Willie’s normal day was sitting in his yard digging holes in the dirt and filling them back up.
Willie's exam revealed that his heart was on the "wrong" side of his chest. His heart rested in his right chest cavity instead of in the normal position in the left chest cavity. Also, there were ominous murmurs coming from Willie's heart which was audible turbulence of blood flowing in the wrong direction. Also, Willie's abdominal organs were on the wrong side of his abdomen indicating that his internal abdominal organs had not rotated in utero, just like his heart.
I obtained an echocardiogram on Willie in Haiti which showed Willie’s multiple complex heart defects. I brought this echo video back to Peoria in 1998 and showed it to the OSF-CHOI cardiologists who studied the echo multiple times at separate cardiac catheterization conferences to decide if Wille was a surgical candidate. The decision was made by all of the cardiologists, including Dr. Albers, that even though surgery would be very risky, Willie deserved a chance. (This is an essential point because I would be criticized by the Medical Director of Children's Hospital for bringing Willie to Peoria in the first place.)
It took me one year to get Willie out of Haiti due to all of the paperwork and lack of communication with Willie’s mom. She had no phone and this was in the days before smartphones and easily accessible social media platforms to communicate with people in Haiti.
When we finally brought Willie to the States in 1999, I had four other Haitian kids with him on the plane--all of them suffering from some form of heart disease. And we were seated in several rows towards the back of the aircraft.
The American Airlines flight attendant knew all five of my kids had some sort of heart defect and so she pinned a gray plastic pair of AA wings over the chest of each child. I noticed that she had placed all of the wings over the left chest of each child except for Willie. And without knowing Willie's heart was on the right side of his chest, she had placed the wings directly over his heart on the right side.
When we arrived with Willie in 1999 in Peoria, another echocardiogram was done and Willie underwent cardiac catheterization to better delineate his confusing cardiac anatomy. His echo and cath were then studied intensively by all of the cardiologists, surgeons, intensive care doctors, and anesthesiologists at pre-op conference and the group decision was unanimous to operate Willie.
Dr. Dale Geiss was the pediatric heart surgeon at OSF-CHOI during those years. And he started Willie's case that morning when he stated "Let's hope for good things. " Willie's delicate and complex surgery lasted most of the day as Dr. Geiss safely corrected what he could of Willies "backward pipes and heart" to improve the flow of blood from Willie's heart to the rest of his body.
During the next five months, Willie was a patient in CHOI’s pediatric cardiovascular intensive care unit. During his prolonged recovery, Willie had many complications that were not totally unexpected due to the severity of his original problem. During these five months, Willie had repeat heart surgery, gallbladder surgery, intestinal surgery, pleural surgery, and surgery to place a permanent pacemaker.
Willie's medical care at CHOI was excellent. And he also received a huge amount of love and support from his host family who visited him every day and the staff in the hospital. For example, an intensivist cut Willie's hair. And nurses brought in snow from the outside the hospital where Willie saw snow for the first time in is life and avidly participated in a snowball fight in intensive care.
I made rounds on Willie every day for five months. I examined him and made recommendations just like all the pediatric specialists did.
During Willie’s long hospitalization, the emotions ran high. We were thrilled when Willie was having a good day, but we were down when he seemed to be crashing again.
And this time period was quite difficult for me when I was criticized by a pediatric specialist for bringing Willie to the US in the first place. This physician, who played a big role in Willie's care, thought that Willie's case was too complex, that his heart condition was too severe to be corrected. And he told me I needed to screen my Haitian patients better from Haiti.
Hadn’t this same doctor known that Willie was screened intensively for over a year by OSF’s cardiac specialists before I brought him from Haiti to Peoria?
And, believe it or not, the same specialist had asked me to bring him patients from Haiti so he could operate them at OSF. I told him he needed to talk to OSF administration to get their approval. However, he was too politically savy to do this, because he was aware of Keith Steffen's distaste of the concept of bringing Haitian kids to OSF for medical care in the first place.
This same physician actually told the Journal Star editors that the Haitian kids I brought for surgery were not good “teaching cases”…i.e., the doctors and residents and medical students and nurses really didn’t learn much from operating on these kids and taking care of them after surgery. The opposite was true, of course. We all learned a lot from the Haitian kids and were able to use this knowledge to help local Peoria kids with complex cardiac problems.
I put this in here about the physician criticizing me because I was hurt by his criticism. Bringing Willie to OSF took over a year...it was very hard to do. And his case was studied carefully by pediatric cardiologists before I brought him.
But the big story here is not how this physician treated me. The big story is that OSF was going to abandon Willie in a few years when he needed further medical care. That is the big story.
Willie was discharged after five months in ICU. Prior to discharge, the Peds ICU nurses had a big party for Willie. The successful treatment of his extremely complex medical case was a testament to what can happen when modern medicine is combined with good communication between the teams of specialists. Willie's case was a huge victory for everyone.
Willie went on to become a poster child for CHOI on their magazine. He had survived against all possible odds....both in Peoria and in Port au Prince.
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Thoughts in 2019:
- Hospital leadership influences the atmosphere within the medical center. When human dignity is emphasized, care is good. But when medical centers are run with fear and intimidation and where all patients are not looked upon as equal, patient care suffers.
- Willie was given great medical care in 2000, but four years later, OSF was going to let Willie die from a worn-out pacemaker. Willie was going to die in Haiti out of sight of the Peoria community who cared for Willie so much.
- Willie was the first Haitian Heart's patient who OSF abandoned but he would not be the last.
- Willie was an incredibly courageous young man as will be detailed in coming posts.
John A. Carroll, MD
www.haitianhearts.org
