Children's Hospital of Illinois Advisory Board

Children’s Hospital of Illinois Advisory Board

January, 2006

Dear CHOI Advisory Board,

I am sure you are aware of Jackson Jean-Baptiste’s death. He was a Haitian Hearts patient and OSF-CHOI patient. OSF refused to accept him for care when his life was on the line. His death was preventable if we as a community cared enough.
In the past 125 years, when would the OSF Sisters Mission Statements and the Catholic Bishops Ethical and Religious Directives have been so ignored? If Jackson would have been your son, I believe all of you would have strongly advocated for his life. If you agree with how OSF responded to Jackson’s needs, please let me know.

Peoria has the talent and technology to be a great medical center in the Midwest if it only had the “heart”. The corporate greed and medical center arrogance within the city and lack of collaboration between the hospitals puts Peorians at risk in many ways. Jackson Jean-Baptiste suffered immensely and he and his mother never understood why he couldn’t return to Peoria for the care he needed and deserved, even with substantial money being offered to OSF. He was gravely ill and would look at my wife and I with a startled look when he knew he couldn’t return to his host family and went to his grave with no explanation.

There are more young Haitian Hearts patients that need to return to OSF to be cared for. What advice do you have so their outcomes are different than Jackson’s? Their families in Haiti and host families in central Illinois are now quite anxious for obvious reasons.

Please advise me how to prevent this obscenity from occuring again at amedical center that “never turns anyone away”.

John Carroll
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I sent the letter below almost four years ago to the Children's Hospital Advisory Board--

Sent: Thursday, July 25, 2002 10:06 PM Subject: Haitian Hearts

July 25, 2002

CHOI Board Members,

Two weeks ago, Haitian Hearts’ worst fear was realized when an announcement was made at a Haitian Hearts committee meeting that all funds for Haitian Hearts from OSF Saint Francis Medical Center were to be terminated. This is a lethal action for many Haitian children waiting to come to Children’s Hospital of Illinois for surgery.

Even though this news was shocking, it was not unexpected. Last year, OSF SFMC administrator, Keith Steffen, had privately stated he intended to cut all funds for Haitian Hearts. Apparently, now is the time. My question is why? How could this action have happened at CHOI with the Sisters’ Mission statement so integral. I can’t believe the Sisters or Children’s Hospital of Illinois Board of Directors would agree with this action. Why was another marginalized group, this time very poor children, denied access to our wonderful medical system? Economic woes and limited resources are expressions central to the lexicon of our times. But is the economy really the issue with Haitian Hearts?

As a “rag-tag” volunteer fundraising team, Haitian Hearts has raised (with the sale of the Haitian House) more that one million dollars in four and one-half years. Every cent went to Children’s Hospital of Illinois to help cover inpatient costs for Haitian children making us second only to Children’s Miracle Network in financial support. OSF SFMC spun to the media that they need to balance the medical needs of local patients with those of Haitians. We all know this may sound logical to the general public, but in reality neither a sick American or Haitian child would be turned away at CHOI. In addition, try to convince any one of the Sisters that a sick child anywhere in the world does not merit care.

It is truly amazing to realize how Haiti’s political future is decided in hallways in Washington, D.C. and at the same time the lives and futures of individual Haitian children are decided at OSF SFMC in corporate boardrooms by a few OSF administrators. It is a shame that these same administrators did not take the opportunity to visit, touch, or be touched by Haitian children at Children’s Hospital of Illinois for the past seven years. This might have made a difference in this tragic decision.

The presence of Haitian children at CHOI guarantees that the Sisters’Mission is alive. Nurses become better nurses. Doctors become better doctors. Resident physicians and medical students from UICOMP can hone their clinical skills that only patient/victims of the developing world can provide.

Why did all of this good need to be destroyed? For 125 years, OSF SFMC has done tremendous good for this community. Its technology and talents are present in a world where the divide between rich and poor has never been greater. Will OSF be proud of their actions in years to come regarding these economic cuts? I implore you to reevaluate this action - an action which does not in any way speak for social justice, personal worth or the dignity of these children.

Children are children. The Mission mandates you to act benevolently towards all.

John A. Carroll, M.D.
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May, 2005
Dear Mr. Marshall, Keith, Paul, and Sister Judith Ann,

While in Haiti in January, I rexamined a former Haitian Hearts patient. Jackson Jean-Baptiste is now 20 years old. He had been operated on for valve problems several years ago at CHOI. He is weak and cachectic now and his heart did not sound healthy. (Medicine brought from Peoria by Haitian Hearts has been keeping him alive.)

I ordered an echocardiogram in Haiti and it was hand delivered to me recently by one the families that cared for Jean-Baptiste in Peoria. They recently saw him in Haiti and are very concerned. Unfortunately, Jean-Baptistre needs more surgery on his mitral valve. Rheumatic fever can be a relentless disease. His situation is critical. Other medical centers around the U.S. will probably think this is OSF’s responsibility and I most likely will not find another center to reoperate Jean-Baptiste.

In the recent past when I requested that OSF take care of a former patient, Mr. Steffen has sent my requests to Mr. Marshall, OSF’s counsel.This arrangement has always seemed kind of odd to me since the Sister’s still own the medical center. Unfortunately, Mr. Marshall has stated that OSF will not care for Haitian Hearts patients referred by me (even when I have offered full charges.) This does not seem to be in compliance with the Sisters Mission Statements or the Catholic Bishops Directives regarding health care in the United States. Why are you taking such Draconian measures, Mr. Marshall?

With the recent investigation of OSF-CHOI by the Illinois Attorney General’s office, I feel that the Attorney General’s Charitable Trust Office was very unimpressed with the lack of zeal OSF showed in turning over the Haitian Hearts donor list since we became a 501C3 organization in October, 2002. When Mr. Kramer told me in his office that Haitian Hearts was “becoming too much competition for CHOI”, I was amazed, but now completely understand what he meant. (I believe the AG office understands, also.)

Jean-Baptiste really needs his mitral valve operated. At the end of 2003,with a significant push from inquiring Haitian Hearts volunteers, Mr.Steffen signed a check from OSF to Haitian Hearts. I did not accept the check or cash it. Who contributed to this check and why were the checks cashed by OSF and not given directly to Haitian Hearts? After two and one-half years we are still in need of our donor list and any other monies donated to Haitian Hearts. Many Haitian children have been and still are dependent on these funds. Haitian Hearts will donate to OSF the uncashed check referred to above for Jean Baptiste’s surgery at OSF, performed by Dr. Geiss, if these simple requests are met. (Dr. Geiss has never refused a Haitian child, encouraged me when I called him using a satellite phone from Haiti to bring the children in need, and never sent a bill.)

Jean-Baptiste and his widowed mother live on the side of a barren mountain in poverty without much hope. He is really sick. Haitian Hearts will try to bring him to Peoria even though Haiti is very unfriendly at the moment. The OSF medical staff and his host family would love to see Jean-Baptiste again. He is begging your mercy, compassion, and honesty.

I will await your response.

Sincerely,

John Carroll, MD
cc: Bishop Jenky, Don Jackson, Father Bliss, Father Driscoll, GeraldMcShane, MD, Dale Geiss, MD
P.S. Joe Piccione, please find something in one of your ethics books thatsupports the Haitian kids. They need you more than ever…



Date: Tue Nov 29 09:43:01 2005From: “Realname” To:sisterjudithann@osfhealth
Subject: Haitian kids
Dear Sister Judith Ann,

Maria and I have spent 4 months in Haiti this year and are returning on Wednesday for our last trip in 2005. Haiti’s situation has never been worse. The economy, infrastructure and violence have paralyzed the majority of Haitians and Haitians that live abroad do not want to return.

I wrote you several months ago about Jackson Jean Baptiste and Faustina. Both of these kids had surgery at OSF several years ago and both need repeat surgery on their mitral valves. They live fairly close to each other on a mountain overlooking the capital. We take them meds from Peoria each trip that lasts 3-4 months. Even with medication, they still need surgery.

Jackson calls his host family in the Peoria area almost weekly telling them how sick he is. According to what I have heard, his legs are now swollen to the point where he cannot walk far. Thus, he cannot notify Faustina that we are coming and I need to check both again. They both are suffering greatly and need to return to the US.
Jackson’s father was killed in an accident and his mother is illiterate and unemployed like most Haitians. While Jackson was in Peoria, his brother died in Haiti from sickle cell anemia. Neither child has electricity in their home or running water. Faustina’s father does notlive with the family and Faustina signs things for her mother as since her mother does not read or write either.

The host families in the Peoria area would love to see these kids again. The doctors that took care of them at OSF would love to take care of them again. However, the host families are afraid to ask OSF because they fear OSF and the ramifications of going against the local health care industry. It must make you so sad that people are afraid of our Catholic medical center which was actually founded for people like Jackson and Faustina.

Sister, you need to be their advocate and change their lives for the better. No one else will. (You would also be “changing” OSF which would be remarkable.)

Keith, OSF’s administrator, told me and others in the confines of his office that fear is a good thing. He repeated this mantra several times. I think poor Keith actually meant this. I believe that members of Peoria’s business community, Catholic priests, and Bishop Jenky himself do not want to get on the bad side of OSF. The public is pretty much out of luck influencing any change with OSF and they know it. OSF even has the editorial board of the Peoria Journal Star covering for OSF’s abandonment of former Haitian Hearts patients who are sick and we have offered full or partial charges to OSF. Maybe the PJS would think that no one would believe that OSF-CHOI was going to let Willie die last year if we had not found a medical center to give him a new pacemaker. (We offered OSF full charges to change Willie’s pacemaker. Keith appeared to be laughing out the administrative window as he stood slightly behind Sister Cansisia when Willie and I were standing on the sidewalk…Haitians are always looking “in”, but usually do not get “in”. OSF’s poster child, Willie, didn’t make it in either.) Now, Jackson and Faustina…

Sister, you told me that you would never turn down a child. I am asking you to accept these two children back that are slowly dying of heartproblems that could be and should be operated here in Peoria. You would be following your mission statements also. Please don’t let your corporate people, administrative people, and lawyer sway you away from your mission statements. With the 250 million dollar project you have undertaken, don’t you have room for two kids that really would show what your mission is about? Technology and buildings are great, but these two kids alone are more important that the entire campus renovation. I know you know that.

You stated to me that the medical environment in the US is very vicious. You were referring to conduct and ethics inside hospitals. I agree completely with you. Don’t be afraid, Sister. Tell Keith to stop his “fear” statements. The lower and middle class in Peoria would love to see you and the other Sisters regain control of your hospital.

Please resond this time. I will bring them to Peoria for surgery and the best Christmas they could every have.

Sincerely,
Dr. John

My cell phone in Haiti is 011-509-411-7545 or drjohn@mtco.com

If you would like to join us in Haiti sometime before Dec. 17, let me know. We work with the Daughters of Charity (St. Vincent de Paul) in their overloaded clinics just outside the capital. You could stay with the Sisters and help us in the clinic each day.

(I never received a response.)
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Date: Tue Jan 24 16:17:21 2006

Subject: Jackson Jean-Baptiste

Dear Bishop Jenky, Sister Judith Ann, Keith, Paul, Gerry, Joe, and Doug Marshall,

We were present on Friday morning when Jean-Baptiste died just a few minutes after midnight. His death was slow and painful over the last several months. However, the last few days were his worst and his screams would bring him out of his low flow slumber. I will spare you further details of his last several hours understanding why none of you would have wanted to witness it. If Jean-Baptiste would just have slipped away silently in his cinderblock house in the mountains of Haiti as designed, it would have been much easier on all of us.

I was able to participate in Jean-Baptiste’s autopsy yesterday morning. As I entered the pathology room, I saw his body lying on the second silver stainless steel table. There were various obnoxious appearing tubes and catheters protruding from it. They were all clogged, cold, and useless as was the body from which they came. However, the pathologist and technician treated Jean-Baptiste with more sensitivity and care than he had received during most of his 21 years of life in Haiti. They carefully and meticulously removed his heart, lungs, liver, and brain.

Jean-Baptiste’s heart was enlarged and muscular due to all the extra work it had to do to keep him alive since a “disease of antiquity”, rheumatic fever, had destroyed his valves a decade ago. A white fibrous scar tissue was abundant and stuck on the front side of his heart due to his previous surgery and the inflammation that the merciless rheumatic fever rendered. I introduced my left index finger into the superior vein leading into his heart which immediately entered a vacuous right atrium. With little effort my finger slipped through his incompetent tricuspid valve into his massive right ventricle. Using my right index finger and thumb to palpate, the left ventricle felt thick and very strong.

An incision was then made through the left atrium which allowed us to stare down at his rock-hard mitral valve. All three leaflets were calcificed and immobile when tapped with a scissors. This valve was the anatomic culprit behind Jean-Baptiste’s suffering. It would not let his blood flow to where it wanted but reversed it and flooded his congested and blue lungs and liver. The doctors in Peoria had seen this problem last spring and wanted to fix it. But unfortunatley, you didn’t give them and Jean-Baptiste the chance.

Jean-Baptiste’s perfect brain weighed 1,150 grams. I guess his brain bothered me the most because it was indeed perfect. This beautiful gray organ had guided him his entire life and had no blod clots, was not atrophied, and had no tangles or plaques confusing his thinking. As I looked at it, I wondered which part controlled Jean-Baptiste’s will to live, his independence, and his ability to speak three languages. Which lobe allowed him to forgive? I knew that he wouldn’t tell me now, even if he could, how he rationalized his deplorable life which was devoid of dignity which should be “usual and customary” for human beings.

The official autopsy report won’t be out for five weeks. The attending pathologist is excellent; however his report will most likely be incomplete. Causes of death probably won’t include poverty without dignity and abandonment.

As the first part of the autopsy concluded, I felt very guilty as I looked at the remains of Jean-Baptiste. To have sent him back to Haiti after his surgery was my mistake. To have believed in you and trusted was a serious miscalculation on my part which helped to shorten the life of our young friend. I did not anticipate and would not have believed your silence as this innocent pleaded for your help.

Jean-Baptiste’s death explicitly reveals the ugly underside to the corporate Catholic “health care system”, formerly known as Catholic hospitals. Multiple biblical passages mentioning the poor, a large litany of Catholic social justice teachings, and the OSF mission statements all supported helping Jean-Baptiste when he needed it. He certainly didn’t need an attorney to advocate for him. His defense had been written years ago. Unfortunately, you all failed him as you ignored central teachings of the faith. A few more years of soccer games and Dairy Queens wouldn’t have hurt Jean-Baptiste and definitely would have helped all of us.

I was finally able to talk with Jackson’s Haitian mountain family on the phone yesterday. His 18 year old sister Nadia cheerfully answered the phone. She had brought Jean-Baptiste mangoes in Haiti during his sickest days in December, while many people frantically searched for a medical center to accept him in the United States. I told her Jean-Baptiste died and heard her shriek uncontrollably as the line went dead.

John Carroll, MD

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In April,2006 we travelled to Haiti for another month and wrote the following e mail to Sister Judith Ann, Bishop Jenky, Doug Marshall, Keith Steffen, Paul Kramer, Gerry McShane, and Joe Piccione:



April 23, 2006

Dear Sister Judith Ann, Bishop Jenky, Doug, Keith, Paul, Gerry, and Joe,

Greetings from Haiti.

On Thursday morning, April 23, 2006, Jackson Jean-Baptiste's sister Nadia showed up for the first time since we have been in Haiti this month. It was the first time we saw her since Jackson’s death in January.

As she walked towards us, this very lovely 19 year old girl had a little smile and was wearing blue jeans and a blue shirt. However, she walked towards us very unsure of herself and very docile, like poor Haitians are trained to be. We hugged her and she sat down at our table with us.

After Jackson had died, I called her and told her the unfortunate news. However, I heard through the Haitian grapevine that she was not sure that Jackson was really dead. As we talked the other day about things, her eyes welled up with tears because she had never seen me in five years without Jackson close by. Jackson was not appearing from around the corner and never would.

Nadia started to cry slowly with one huge tear that trickled slowly down her right cheek. That turned into massive body shaking sobs that went on for 30 minutes as she lowered her head to her knees.

I told her how sorry we were for Jackson’s death. Kleenex after Kleenex only helped a little. My weak attempts to tell her that Jackson was in a better place and wasn’t suffering anymore did not help much either. Nadia stated that she understood, but Jackson was her “only big brother”. She had lost two other brothers and her father was murdered.

Nadia asked to see the album of pictures that we brought with us of Jackson’s funeral in Illinois. As she paged through the little album, she sobbed more and shook her head no. I think for the first time she realized that Jackson was gone and this was all real and it was really bad. Jackson was indeed buried on the hillside of a little cemetery overlooking a dreary looking brown cornfield in the Midwest.

Nadia asked why Jackson’s face was swollen in the casket and his lips turned down. I told her that before he died his face was swollen and that is how he ended up after the morticians work. She stared at the face of her brother that used to make her laugh by dancing and singing with the radio on and acting like he was playing the guitar. She told jokes with him outside their shack in the morning on the mountain overlooking Port-au-Prince. How could Jackson look so sad in death? This was all too much.

She also saw photos of all the white Americans that had come to his funeral and sang for him in the cemetery on that cold and rainy January day. She saw my niece as she stood at Jackson's casket looking at the flowers on top. Nadia saw the faces of his host families at the wake and cemetery. She saw the statue of St. Martin de Porres at the church where the funeral Mass was held in Peoria. There was an amazing likeness of the statue’s face and Jackson’s live happy face.

After an hour of this misery, Nadia was able to calm down, and we devised a plan to get a Jackson’s heavy suitcase, laden with gifts for him while he was alive, to his home two hours up the mountain.

Yesterday, on Saturday morning, Nadia returned with a driver to transport Jackson’s belongings and my wife Maria and I to his home to see his mother for the first time since his death. Jackson’s 15 year old brother Gabriel Moise came along. We threw Jackson’s suitcase in the back of the pickup, and after the driver took a rock he had wedged between his battery and hood and banged on something in the motor, the ignition kicked in and we were off through the insanely busy streets of Port-a-Prince.

Coursing up the mountain was a painful experience. The roads were jam packed with people and are full of holes and curves, stalled Mack trucks, and people backing their vehicles down their lane directly at us.

When we arrived in Jackson’s village called La Boul, we were only able to go so far until the road turned to dirt and holes and the driver pulled over. We all got out at that point and lugged Jackson’s suitcase down slippery and steep dirt trails. These were the same hills and trails that Nadia and her mom had carried Jackson on a chair to see us on December 1, 2005 when he was too weak to walk. It did not seem humanly possible that Jackson survived that trip.

I had been to Jackson’s home five years ago and the surroundings all started looking familiar. As we approached Jackson’s home, approximately 25 of his neighbors were on a front porch of the home next to Jackson’s singing and praying very loudly over problems they were having.

Jackson’s mom Rosette, older sister Claudette, and eight year old brother were there to greet us on a small patch of dirt that serves as their front yard. Rosette was not smiling but she gently hugged us. I could hear her wheezing from her asthma. She is 44 years old but appears quite a bit older.

She invited us in her little two room shack. We entered through the front door, which is a piece of cloth, into a room about 12#12 feet. The floor is cement and the walls are cinderblock and cement. The roof is the usual Haitian corrugated metal roof with holes in it where we could see dots of daylight above us. One light bulb hangs suspended from a wire that is fed with borrowed electric current from the big electric line close to their home.

An adjacent darker smaller room’s walls are caving in and its roof is leaking even worse than the main room. Rosette stores her second hand clothes that she buys in a port city in this room and sells them on a street corner near her home in La Boul. Nadia and her little brother sleep in this room.

Jackson’s bed was to our immediate left in the first room and they have turned it into a little “shrine”. The bed has a spread and small pillow. A red covered Bible with “Jackson” scribbled on the side sat on the pillow as did his fake Rolex looking watch and his picture album of all the blans that helped him in the United States when he had his previous heart surgeries. A ragged stuffed little cloth dog that must have been Jackson’s sat guard in the middle of the bed facing the pillow.

Rosette talked about how much she appreciated what we had done for Jackson. She spoke of her life and that not much is left for her. She is grateful for her children, especially Nadia, who seems like she can help the most now that Jackson is gone.

Maria slowly unloaded Jackson’s suitcase with his second hand clothes that were still neat and folded. At this point, Rosette started to cry. Maria removed a smooth heavy rock from the funeral that was engraved “Jackson Jean-Baptiste Jesus Loves You”. Rosette could not read the rock because she is illiterate, or the numerous notes from people in the States. When I handed her the funeral pamphlet with Jackson’s smiling face on the cover, she barely looked at it and did not open it. His sisters glanced at his obituary in the Peoria Journal Star, but could not read the English.

Maria explained who gave which gifts and Rosette impassively shook her head as if she understood.

We gave her only a small portion of the money that was donated to her at Jackson’s funeral, so if she gets robbed, the thieves will get only a small portion of the donation. We will disperse the rest to her in the same quantities when we come in the future. Also, it would be nice if a work team could be organized to build her a new home or patch the leaky roof and repair the wall that is crumbling in the dark room.

Sister and Bishop Jenky, I am going to ask Rosette if she would like to visit the United States so she can meet Jackson’s host families in the Peoria area, his doctors and nursing staff at OSF that fought for his life until the very end, and visit his grave in Goodfield, Illinois.

I would like you to be able to meet her. She will thank you for all you did for Jackson but will have some questions for you regarding Jackson’s demise in 2005.

She will probably ask you, Sister Judith Ann and Bishop Jenky, what your understanding was regarding Catholic social teachings, the Bishops’ Ethical and Religious Directives regarding health care, and the OSF’s Sisters mission philosophy regarding her son. Rosette will want to see the plans for the new 200 million dollar Children’s Hospital of Illinois, and may ask you why you would not accept 20,000 dollars for Jackson’s care in Peoria when he really needed OSF's medical expertise. She will have specific questions for Keith and Paul, and will ask some ethical questions of Joe and Gerry, I am sure. Doug, her legal questions will probably be limited, but I am sure she would meet you anyway, since you played such a large role in Jackson’s life.

I will obtain her travel visa and Haitian Hearts will purchase her ticket and travel to and from Peoria with her. You don’t have to worry about these details.

Please let me know when a good date would be when we could all get together with Rosette so open and honest communication, a central OSF mission statement, can occur. She lost her son. She deserves this, don’t you think?

Sincerely,

John Carroll