Sunday, January 29, 2006

Jackson's Autopsy:

John was present during for Jackson's autopsy. This was difficult for him, but he felt he owned it to Jackson to be present. He wrote the following letter based on this experience.

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 cinder block 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 unfortunately, 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
A Stupid Death:

There’s not much that’s more depressing than arranging for a 21-year-old’s funeral. Except maybe calling his mother to tell her he died. Sigh. Even though I fervently believe in heaven, and know Jackson’s there, it’s not comforting me much because he went too soon. I remain stuck in the feeling that Jackson should not have died, that it was wrong, wrong, wrong and that it wouldn’t have happened, in my opinion, if OSF St. Francis Medical Center had accepted him, their former patient, back in May when John asked them to.

At Jackson’s visitation, an OSF employee came up to us in tears. The employee wanted to know if Sister Judith Anne Duvall, the president of OSF had received our e-mails pleading for Jackson’s life. Yes, John sent her these e-mails; most of them were directed to her. At this the employee started crying even harder. The employee stated said that they had heard a talk Sister Judith Ann had given this past Christmas season in which she emphatically stated that OSF would never turn away a child! “She lied,” the employee kept repeating.

This is what is so upsetting about OSF’s behavior: in my opinion, they are world class hypocrites. They will make pronouncement about not turning away a child, while they are doing that exact thing. This non-profit institution hides behind Catholic words and posturing while they act like the most cutthroat, capitalistic organization in town. From closing the mental health unit, to asking sick people how much their homes are worth, to dangerously monopolizing paramedic and ambulance service in Peoria, they behave like the most greedy, for-profit organization around. And they try to have it both ways, pretending to be a non-profit, good Catholic organization, while violating Catholic social teaching left and right.

My husband John and I have had many discussions about what to do re: OSF. He’s of the opinion that we need to continue to expose their misdeeds so that people know what’s going on. I actually think he’s done a good job of this, especially given that criticizing OSF, the second largest employer in town, tends to paralyze people—editors, elected officials, employees, average citizens—with fear. But I don’t know if we’ve ever lived in more apathetic times. We know of people who have lost loved ones due to the incompetence of AMT, the ambulance company that is co-owned by the three Peoria hospitals and that has a monopoly on paramedic and ambulance care in Peoria, and they won’t be publicly critical of AMT or OSF because they are afraid of repercussions. If this is the case, people sure aren’t going to go to bat for some sick Haitian kid, right Mr. Cobb?

John wants to keep fighting OSF in the hopes that people will wake up, join the fight and change will ensue. I view OSF as a black hole that sucks the energy and life out of anyone (except John) who tries to oppose it. In much the same way that we deserve President Bush, perhaps we deserve what we’re getting in central Illinois. In my opinion, we tolerate OSF’s bad behavior and permit it to continue. One day, the chickens will come home to roost.

As for now, we’ll mourn Jackson and continue to work in Haiti and get the occasional kid out for medical care.
A Eulogy for Jackson:

The following eulogy was delivered at the end of the funeral Mass for Jackson Jean-Baptiste, which was held at St. Martin de Porres Catholic Church, the oldest Catholic church in Peoria, named after the first black saint from the Americas. Across the street from the church is a statue of another Haitian Jean-Baptiste, Jean-Baptiste du Sable, the founder of Chicago and former resident of Peoria.

How does it come to be that a young man who was born and spent most of his life in Haiti has a funeral in Peoria Illinois? Through the grace of God, we were able to know and love Jackson Jean-Baptiste.

Jackson was born 21 years ago near Port-au-Prince to Maxil and Rosette. His father was killed when Jackson was 9 and two of his brothers have also died. He has one younger sister, Nadia.

When Jackson was a teenager, he was suffering from heart disease due to rheumatic fever. Some friends brought him to John Carroll, who arranged for him to have heart surgery in Peoria. During his time in central Illinois, Jackson befriended many people. He lived with the Mike & Susie Zobrist in Goodfield, and he attended Eureka Middle school. After Jackson returned to Haiti, he continued to keep in touch with his friends. John would bring him medicine to Haiti and continued to examine him.

This past May, it became apparent that Jackson was sick again. We brought him medicine in September. In December, Jackson had become so weak that his mother and sister carried him to us from their home, two hours and four tap tap rides away. Jackson stayed with us for the next four weeks. You learn a lot about a person living in a small room with them for 28 days. Here is what we learned:

Even in the face of his suffering—it was hard for Jackson to eat, sleep, and walk—he wanted to live. Poor Haitians, even those who are healthy, have very difficult lives. Jackson’s sister spends 13 hours twice a week walking for and carrying the water the family needs. His mother travels many hours on bad roads to buy second hand clothes which she sells near her home. Despite the difficulties of Jackson’s life, he had a strong drive to live—God made life good. His faith and hope played a big role in keeping himself alive as we searched for a hospital to accept him.

Jackson loved his family and friends in central Illinois. His mom and his sister visited him as often as they could each week. He was concerned about their safety and asked them not to come to the airport, where it was dangerous, to see him off. They said their good byes the day before. He spent hours looking at a small album of photographs of his time here. He was very hopeful that people at home were trying to find help for him.

Jackson conducted himself with such dignity. He never complained. He always spoke English to us, one of three languages he knew. He kept himself and the room very neat. He was thoughtful. When he heard us talking about Barbancourt Rum, he told us his home was not far from where the rum was made. Would we like some rum? he asked. The next day when we returned from the clinic, there were two bottles of rum in the refrigerator.

Jackson had some bad days during the time he was with us. But he had some good days too. We won’t forget the evening, shortly before we left, that we sat by the pool. As we dangled our feet in the water, Jackson told us about his life. People where we stayed grew attached to Jackson.

We were overjoyed when through a series of miraculous events, Jackson was accepted by Cleveland Clinic on December 23. The next few days were a flurry of activity. We got his passport extended bought plane tickets, and obtained a precious U.S. visa. Jackson was happy but weak; John had to carry him through the buildings.

Jackson was at Cleveland Clinic from December 28 through January 21 when he died. As the doctors tried to get Jackson ready for surgery, he waited. But it was hard. His suffering continued in Cleveland.

Suffering is one of the themes that runs through Jackson’s life, most obviously in his last few months. It is often hard to make sense of suffering, especially in those who seem to have an unfair share. We know it exists. We know God calls us to try and relieve suffering in others. But still it comes. Jackson’s suffering often reminded us of the suffering of Jesus. Jesus suffered for us. Perhaps the suffering of Jackson and all of us hollows us out in a sense, strips away all that is non-essential, and makes a larger space for God’s love.

It’s a mystery that with our limited powers we can not fully understand. But we can have faith. “We know that God makes all things work together for the good for those who have been called according to his decree.”

Jackson was surrounded by love and support from many people of the Apostolic Christian faith. Tomorrow at 10 am he will be laid to rest at the Goodfield-Congerville Apostolic Christian Cemetery in Congerville.

We thank God for the opportunity to know and love Jackson Jean-Baptiste, the boy from Haiti with the beautiful smile, and we ask God’s blessing upon his soul and upon all those who love him.
The Obituary of Jackson Jean-Baptiste: The following obituary appeared in the Peoria Journal Star on Wednesday, January 25, 2006.

Goodfield - Jackson Jean - Baptiste, 21 years old, from La Boul, Haiti, formerly living with host parents in Goodfield, died at 12:30 AM on January 21, 2006 in Cleveland, Ohio. He was born on August 1, 1984 in Petion-Ville, Haiti to Maxil and Rosette Jean-Baptiste.

He is survived by his mother, Rosette, and one sister, Nadia in Haiti. His father and 2 brothers preceded him in death.

Funeral mass will be held at 10:00 am on Friday January 27, 2006 at St. Joseph Catholic Church, formerly St. Martin de Porres Catholic Church, in Peoria. Visitation will be held from 6-8 pm on Thursday at Argo-Ruestman-Harris Funeral Home in Eureka. A grave side service will be held at 10 am on Saturday at the Goodfield-Congerville Apostolic Christian Cemetery in Congerville.

Jackson attended school in Haiti for 9 years that was interrupted frequently by heart problems caused by rheumatic heart disease. He was brought to the United States by Haitian Hearts in 2001 for heart surgery in Peoria. In May, 2005 Jackson was diagnosed with a recurrent heart problem and brought to Cleveland Clinic on December 27 where he was treated.

During his stay in central Illinois, he stayed with loving host families in the area and attended school at Eureka Middle School. Jackson was very intelligent and spoke French, English, and his native Haitian Creole.

During the last six months of his life, Jackson suffered tremendously due to his heart problems. He was a victim of poverty and greed that sustains and propagates the degrading conditions in which he and his family lived in Haiti. Jackson was very independent and strong and fought to keep himself alive and deserved much more dignity as a human being than he was given.
Jackson's mother has now lost her main source of strength. He will greatly be missed by his Haitian family and his host families in Illinois.

Online condolence will be received at and will be forwarded to Jackson’s mother in Haiti.

Donations can be made to Rosette, his mother, through Haitian Hearts PO Box 2363 East Peoria, IL 61611.

Saturday, January 21, 2006

Jackson Jean-Baptiste: August 1, 1984-January 21, 2006

Things don’t always turn out the way we hoped for, worked for, prayed for, wanted. Isn’t that one of the hard lessons of life? Jackson died this morning. As one of his doctors said, “It is heartbreaking.” For so many reasons.

Independent of his severe heart problem, Jackson had a hard life. His father was murdered, his mother lost two other sons, one as an infant and the other as a young adult to sickle cell. And yet Jackson received blessings too. In 2002, he came to the United States and had his health temporarily restored. He knew he was loved by his own family—his mother and sister carried him to us on December 1—and his American families. These people hosted him in their home, where he became part of the family, sent letters and money to Jackson, visited him here in Cleveland, prayed for him.

Perhaps it was all the love, in the face of cruel poverty, that gave Jackson such a strong will to live. I believe he kept himself alive until John arrived in Haiti, kept going and even improved during the four weeks he was with us in Haiti, and until a day ago was able to tolerate all the testing and waiting involved in preparing for major heart surgery, all with a heart, that an echo technician in Cleveland said, “does not appear compatible with life.”

The last two days of Jackson’s life, his health significantly deteriorated. Prior to this, it had been a struggle to control the volume of fluid in his body: too much fluid, and his liver became impaired. Too little, and his kidneys didn’t get the blood they needed to function. Balance is so important to health; this last imbalance required Jackson to go on dialysis and back to intensive care, where after a final interventional procedure, he died. While he was awaiting this procedure, four nurses from another floor where Jackson had been came down to visit him, a gesture typical of the caring shown by the Cleveland Clinic employees.

Many times while at the Clinic, Jackson’s experience and suffering reminded us of Jesus Christ. Our niece Jennifer and John saw Jackson get his feet washed by an aide. As she gently rubbed lotion over his heels and toes, she told him how nice his feet were, feet that for much of his life in Haiti didn’t have the benefit of shoes. Yesterday, John held wetted gauze to Jackson’s parched mouth and lips to give him a little moisture. After the last procedure, we sat in a waiting area and through a screened window, watched the silhouette of Jackson on a stretcher, attached to several machines, be wheeled slowly, almost reverently, down a hallway, accompanied by the interventional team. “It looks like a processional,” said our friend Mary who waited with us.

The hospital will do an autopsy, which will likely pinpoint the cause of death. But we don’t really need an autopsy to know why Jackson died. He died because of poverty. When he was ten, he got strep throat but not the few pennies worth of antibiotics needed to treat it. The people of Haiti lack so much: sanitation, clean water, food, education, money, a health care delivery system. There are few places to go to get medicine and little money to buy it. So, Jackson’s strep developed into rheumatic fever, and it ravaged his heart valves.

We live in a world with billions of poor people like Jackson. Therefore, I submit to you that we live in a world constructed in a fundamentally unfair way, which results in a few of us having way too much and others having far too little. For those of us in the too much camp, we should feel profound unease, not just for its own sake, but to spur us to action. Today I don’t have political/economic reform to suggest, though I think this has to happen. Today I’ll suggest personal reforms: that people like Jackson somehow have to be more of a priority in our lives and that we need to examine ourselves for ways in which we perpetuate the injustice. Change can be difficult and uncomfortable, but here’s the carrot: in making the world a better place, we can make our own lives better, too.

For today, we are sad and questioning. Given the somewhat miraculous events that occurred to get Jackson to Cleveland Clinic, it is hard to accept that he died. Perhaps we Americans are the ultimate “happy ending” people. We don’t like death. It’s the ultimate defeat.

Dr. Paul Farmer, a doctor who works in Haiti and other poor countries, has coined a phrase “fighting the long defeat.” When you ally yourself with the poor, he explains, you’re allying yourselves with the world’s losers and you can expect many defeats. You get a victory now and then, but overall, it’s mainly defeat. However, being with the poor, helping them, is the right thing to do, and so you fight the long defeat. The flipside of this philosophy is contained in a line from King King, which Jennifer and I saw the other day: Defeat is only momentary. I think defeat is somehow both long and momentary. Jackson's life, ending at age of 21, can be viewed as a long defeat, and in many ways it was. But there were transcendent moments of victory, too.
Though Jackson died, we are thankful that he was given some hope and that he knew how much people loved him. He had the opportunity to receive good medical care. We learned much from him—how precious life is and how to persevere in seemingly impossible circumstances. We will follow Jackson's example: we won't give up.

Jackson always comported himself with dignity. He wanted to be able to attend to his own needs, and it was difficult for him when he could not. His quiet strength and his determination to do the best and the most that he could each moment were humbling.

We love him and we miss him.

Tuesday, January 17, 2006

A Tale of Two Prisoners:

Last March, John and I met Father Gerry Jean-Juste at his parish, St. Clare’s in a poor section of Port-au-Prince. We attended Mass there and were impressed by Father’s energetic and prayerful advocacy for the poor. At the end of Mass, Father had a little girl, Raphaella, who was badly burned on her face, arms, and torso, come up on the alter. He asked the congregation to help this six-year-old and her family, who had spent all their money on Raphaella’s care, when she was burned by an exploding propane tank. Raphaella’s skin was still healing; the scar tissue was hardening around her mouth and arm, making them difficult to move.

After Mass, we approached Father Jean-Juste and told him we would try to find a hospital in the States for Raphaella. Fast forward several months: thanks to a phone call I answered while in the shower from an angel I had never met named Keri, Raphaella was accepted by Boston Shriners Hospital. This fine institution agreed to provide her with surgery at no cost to her or us.

In the meantime, Father Jean-Juste was arrested on bogus charges and imprisoned. This is the second time Father has been imprisoned for no reason, other than advocating for the poor. We visited him in September and again in December. At the second visit, John examined Father, as the lymph nodes in his neck and under his arms were noticeably swollen. John participated in a press conference in PAP, arranged by American lawyer Bill Quigley, stating that Father was seriously ill and needed treatment.

Around the time of our second visit to Father, Rose, our friend in PAP, accompanied Raphaella and her mother to the U.S. consulate to apply for visas. The hospital required a legal guardian to accompany Raphaella. We had also thought it best that a parent be with Raphaella as she underwent what could be a painful and lengthy surgery and recovery. The consulate official granted Raphaella a visa but denied her mother, based on his belief that she would not return to Haiti.

Rose sent letters to the Inspector General of the State Department, the host family had their congress person contact the consulate, and we wrote the following letter asking the consulate to reconsider their decision.

To Whom It May Concern:

Haitian Hearts is sponsoring the trip of Raphaella Alexandre, a Haitian minor, to Boston Shriners for medical care, with her initial appointment on January 18. Raphaella was severely burned and will be having reconstructive surgery. Boston Shriners is requiring that one of Raphella's legal guardians accompany Raphaella to the U.S. for medical care.

The U.S. Consulate has approved Raphaella for a visa to come to the U.S. for treatment but denied a visa for her mother. We are respectfully requesting the consulate to reconsider this decision and grant Audanise Alexandre-Saint Felix a visa. Without her mother accompanying her, Raphaella will not be able to receive medical treatment. Raphaella and her mother will return to Haiti after the completion of Raphaella's medical treatment, and we will have them verify this by checking in with the U.S. consulate.

If you have any questions about this, please e-mail me at Thank you very much for your help with this matter.


John A. Carroll, M.D.
Medical DirectorHaitian Hearts

A couple days later, we received this disheartening response.

Date: Wed, 11 Jan 2006 12:15:17 -0500
From: "PAP, NIV" <>
To: "'Realname'" <>
Subject: RE: NIV for Audanise Alexandre-Saint Felix

Dear Dr. Carroll:

This is to inform you that Ms. Audanise Saint Felix Alexandre was determinedto be ineligible for a B1/B2 visa under Section 214(b) of the Immigrationand Nationality Act. This section of law stipulates that all nonimmigrantvisa applicants must satisfy the interviewing consular officer that they areentitled to the type of visa for which they are applying and that they havesufficient ties to their country of residence, to overcome the presumptionof being an intending immigrant as required by law. Therefore, we wouldsuggest that the family designate a temporary guardian who will travel andcare for Raphaella during her stay in the United States.


The Nonimmigrant visa section

I was about ready to give up on getting Raphaella’s mom a visa. But that same week, I received the following letter from indefatigable Rose, our contact in PAP with the good news that both visas were being granted.

Dear Maria,
Both visas are for 1 year, until Jan. 12, 2007!
This will give the hospital a chance for more flexibility in the treatments if they think spreading them out is good, perhaps even an intermission at home in Haiti.

I received another message of refusal of a visa for Raphaella's mother late the day before yesterday, unsigned, expressing the same objections as usual, saying that based on the interview, the interviewer made an unalterable decision. This morning I started trying to reach Jay Smith at about 7:00. At 7:45, Jeanette Langston Duval, head of Non-Immigrant Visa Division answered his number and repeated all the arguments again at some length. I told her I had been present and there had been nothing resembling an interview. The interviewer told me he was not even required to read anything in the file. He knew that the woman was a high risk for returning to Haiti. I spoke of how familiar I was with all the circumstances and that I would stake my life on their returning to Haiti, and that we needed to know people well enough to protect our credibility for the sake of all those other sick people, principally the children, that we needed to bring to them. She agreed to speak to Jay Smith and call me back by 11.

At that point I think Mr. Smith's probable awareness of the efforts and complaints of many people to help this child and mother came into play. At 8:30 came a call from J. Langston Duval saying the visas would be ready this a.m. Just bring the passports down as quickly as possible.

She added that they were doing this for me as an exception. This motivates me to write a final chapter to the State Department Inspector General about the ongoing flaws in the whole process because we cannot have occasional exceptions and spend such excessive and unnecessary labor on each request. I hope to get to that tomorrow and then on to Faustina.

Again, many thanks and blessings on all you and John do.


Things can change in a hurry, especially when Rose is on the case.

While much of this was going on, Dr. Paul Farmer e-mailed John that he was going to try to visit Father in jail. He did and was able to draw some blood and send it to a lab in Miami, which confirmed that Father has chronic lymphocytic leukemia. Now the pressure is really on to let Father out of jail—where he is being unjustly held anyway—so that he can receive appropriate medical treatment. Members of Congress, Amnesty International, doctors, Haitians, Americans, and family members are all vociferously calling for Father’s release. We hope and pray this happens soon.

I have booked the tickets for Raphaella and her mom to travel to Boston this weekend. It would be beyond cool if Father could be sprung from his prison at the same time that his parishioner Raphaella is being sprung, however temporarily, from her poverty.

Monday, January 16, 2006

Christmas in January:

We finally celebrated Christmas with our families this past weekend. My good mom kept up the tree until we got back to Peoria. After the huge buildup to the big day, Christmas must seem far in the past to most, though the season only ends on January 6, with the feast of Epiphany.

Here are some memories of our Haitian Christmas: A couple of weeks before the much anticipated day, my six-year-old niece asked me if Santa Claus brings presents to the children of Haiti. I had to swallow hard and then wimped out on telling her that Papa Noel, as the chubby man in red is called, bypasses most of the country. We’d asked Jackson if he had ever received a present on Christmas. He said no.

Speaking of Jackson, he is starting his fourth week at Cleveland Clinic, where the doctors and nurses continue to fine tune him for surgery. Jackson, like many Haitian patients, surprises us with his will to live, especially given the abuse his heart has taken. Now, it’s a question of balancing his fluids and electrolytes so his kidneys, liver, and heart function as optimally as possible. Jackson looks slight and meek, but he is a tough, tough guy. He has had quite a few visitors from the Peoria area.

On Christmas Day, we walked the mile to 9 am Mass at the Missionaries of Charity. As we hiked up the hill to Delmas 31, we were greeted by a distinctly un-Christmaslike sight: we noticed a commotion to our left and saw a young police officer slamming a man between the shoulder blades with a night stick, while yelling “Fe bak! or “Go back!” He hit the poor man so hard, that the on the fourth or fifth blow, the stick broke. The policeman stood there in surprise, holding a small jagged piece of wood. The man continued walking during this attack as if he was being hit with a Nerf bat. He was kind of singing out as he walked. We think he probably had some kind of a mental problem. Nothing this man was doing or did, justified the beating. Weak people in Haiti are often preyed upon and treated with little compassion. This attack seemed to be pure sport. After the stick broke, the police made no attempt to arrest the man.

We did make it to Mass, where the choir sang loudly and often during the two and a half hour celebration. One of the songs was to the tune of the Battle Hymn of the Republic, with the words, “Glory, glory alleluia,” sang in English.

In a country lacking necessities, we aren’t surprised to find the material manifestations of Christmas absent. In other situations, I have heard people say, “You can’t miss what you’ve never had.” I don’t know about this. I asked John if the employees where we stay feel fortunate compared to the abysmally poor people in Haiti. “Oh yeah, they do,” he responded. “The people in Cité Soleil, they live like animals, and they know it. You know, the lady three hovels down, she has a black and white TV that works once in awhile, when there’s electricity, and they gather round and watch some Dominican soap opera. They know there’s another kind of life out there, and they know it’s not going to be happening anytime soon for them.”

Wouldn’t it be nice if the spirit of Christmas was a year round thing?

Monday, January 09, 2006

“I Will Wait For You.”

Along with, “Don’t forget about me” (see previous post), “I will wait for you,” could serve as Haiti’s national motto. We hear it frequently when we are leaving the country or when we have told a family we are searching for a hospital. They mean it too: they will wait.

Today, we are the ones waiting. Jackson’s surgery has been postponed until later in the week. The doctors are concerned about his liver function, though except for his elevated bilirubin (bile) levels, everything with this forgiving organ seems to be improving. The liver is making clotting factors, which is a good thing as when Jackson goes under the knife, his blood will need to clot. Because of all the diuretics, swelling all over his body, including his liver has decreased, and he feels much better.

It was hard to tell him this morning that he won’t be having surgery on Tuesday. Having lived with the pain of his dysfunctioning body for months now, he more than anyone is anxious for surgery. “Why aren’t they going to operate?” he asked. “They want you to be as strong as you can,” we reply. I don’t think this makes much sense to Jackson as he now feels as good as he has in awhile, and he knows he needs surgery to feel really good.

Walking down the skywalk to get a bite to eat, I bump into Jackson’s surgeon. We haven’t met, but I recognize his picture from the Cleveland Clinic website. This accomplished surgeon is shockingly young. He says that he doesn’t think the surgery will be on Tuesday, but later in the week after any additional liver problems have been ruled out. “We want him to be as strong as he can,” he reiterates. I tell him we have seen Jackson this morning, and his swelling is reduced. I tell him Jackson will do fine. The surgeon seems happy to hear about the swelling reduction. I thank him for the care he is giving Jackson. He says he is happy to do it. As he walks away he says, “I will take care of Jean-Baptiste.

So Jackson will wait for his surgeon. Haitians are used to waiting: they’re waiting for elections, waiting for a decent government, waiting to get to America, waiting to see a doctor. Waiting. Waiting. Waiting. They are used to it, but I think the kind of waiting Jackson’s doing is a cruel though necessary kind. He's been in a hospital bed for almost two weeks, staring at the cold snow he hates falling on a gray Cleveland. He's having a good day today--his nurse George is going to take him on a field trip to the gift shop-- but the bad days aren't lurking far away in memory or reality. So, like the old Tom Petty songs says, “The waiting is the hardest part.” At least it's better to wait in Ohio than Port-au-Prince.

Sunday, January 08, 2006

Life Goes on (Badly) in Haiti:

Not much happy news coming from Haiti since we left. The elections have been postponed again, the kidnappings continue, the Brazilian military leader of the U.N contingent committed suicide on Saturday, U.N raids into the slums are being planned, and a general strike to protest the kidnappings is scheduled for Monday.

A little context on the above: the U.N, OAS, and government of Haiti are all blaming each other for yet another election delay. The voter cards haven’t been distributed, among other logistical snafus. Many theories abound as to why elections aren’t happening. Some say that the anti-Aristide forces don’t want the huge front runner and former Aristide supporter Rene Preval elected. Others say it’s the Columbian drug runners who don’t want any stable government that might crack down on the flow of drugs through Haiti from Columbia to the U.S. It might not be any more than the general incompetence that plagues Haiti.

A few white Americans have been kidnapped and also some election workers, which is always worthy for a few lines of print. Some charge that U.N. soldiers are being paid off by the gangs to look the other way and that some corrupt police are in on it too.

Apparently, the U.N is planning on occupying Cite Soleil, home of many of the kidnappers. This will undoubtedly result in many deaths. Some reports say that the General who shot himself at the Hotel Montana disagreed with this plan. The evening before his death, he met with two prominent Haitians, one of whom is organizing a general strike on Monday to protest the kidnappings, who want the slum raids conducted.

How does all this chaos and violence affect our work? Haitian Hearts has five children accepted for surgery. We have brave, committed people in Haiti who are trying to get these children’s visas and other paperwork completed so that they can travel. All of the above makes getting anything done more difficult than usual. Mothers with sick children already have to make heroic efforts to get their children to the doctor. The dangerous, unstable conditions in Haiti result in many “inadvertent’ deaths.
The World Class Cleveland Clinic:

We’re starting to know our way around Cleveland Clinic, or at least the departments we need to go to. The main campus of the clinic is comprised of 37 buildings, many connected by skywalks. We cross the Euclid Street to the closest building and follow the walks to building G, home of the Heart and Vascular Institute where Jackson has a room on the 9th floor. Emmanual is in the Children’s Hospital in Building M. Soothing classical music plays in the public areas of the hospital. Pictures and art work line the walls. The floors are beautiful and shiny. Glassed in waiting areas at the end of many hallways allow people to watch the clinic construction under progress.

For the past 11 years, Cleveland Clinic has been ranked the number one heart hospital in the United States. This reputation attracts people from all over the world. One of the employees at the swanky Inter-Continental Hotel told us that a few months ago, the Amir of Kuwait came to the Clinic for medical care. He and his entourage took over three floors of the hotel.

The people at the Clinic seem to really like their jobs and be invested in the patients. One of the nurses, whom we bumped into last night, wants to take Emmanual home. Thankfully, he has a wonderful host family and an adoptive family from Washington State who is visiting him in Cleveland. George, one of Jackson’s nurses, tells us how much he likes Jackson and how he’d like to keep in touch with him after his surgery. Yesterday, I paged the Catholic priest on call to ask him to stop by the room of the young Haitian man and offer him sacraments. “You mean Jackson?” said Father Bill. “I’ve already been to see him several times. He’s a wonderful young man.” Almost everyone at the Clinic seems to be touched by either Jackson or Emmanual.
“You, you’re the one, you are the only reason . . .”

We’re staying at the Ronald McDonald House, a lovely 37-room facility built in 1994, across the street from the Cleveland Clinic. Families from all over the world, country, and Ohio stay here while their children are receiving medical care. One family has been here for two years. Besides the bedrooms, which are like hotel rooms, the Ronald McDonald House has a large kitchen, play room, computer room, library, television room, and sitting area. The facility is largely run by volunteers. Everyone is cheerful and helpful. Many groups from around the community bring in meals. We are responsible for cleaning our rooms and laundering our sheets and towels. They give us room keys to wear around our necks, which make us feel very official. I will now be more inclined to drop spare change in the clear containers at McDonalds, where they collect money for these houses.

Our main conduit to the rest of Cleveland is Mary Hurley. For the past 11 years or so, Mary has spent half of the year in Haiti, which is where John met her. Mary works at a home for the dying run by the Missionaries of Charity. She found a host family for Jackson, whom we met last night. They stopped by the hospital today and we introduced them to Jackson. Earlier in the week, Mary took us to Little Italy, not too far away, to Mama Santa’s for some of the best pizza we’ve ever had. We’re returning to the neighborhood this evening to attend Mass at Holy Rosary.
Surgery Scheduled:

Jackson Jean-Baptiste will have surgery on Tuesday, January 10. John talked with the doctor a couple of days ago, and five times this very skilled surgeon, who was chief resident of both general and cardiac surgery at The Brigham, Harvard Medical School, referred to Jackson’s surgery as high risk. His heart, lungs, and liver all must be able to handle the assault of surgery, the bypass machine, and the new St. Jude’s valve, which will replace his trashed and tight mitral valve. But all realize, especially Jackson, that there’s an even greater risk if he doesn’t have the surgery. “It is in God’s hands,” we frequently say.

We continue to be impressed by the care that both Emmanual and Jackson are receiving. One of the nurses at the hospital wants to take Emmanual home. He will be leaving the hospital to stay with a wonderful host family, who were trained in n-g tube feedings this morning. Emmanual has had a couple of blood transfusions. His hemoglobin has doubled and he has put on a half a pound since he’s been in the hospital. He complains now when we take away his pretzel stick and his skin is much darker. These are both good signs. He will probably have surgery in about a month. Everyone comments on Emmanual’s eyes. The infectious diseases doctor said, “When you look in Emmanual’s eyes, you see all of humanity.”

Saturday, January 07, 2006

Little Emmanual:

Emmanaul has been in Cleveland Clinic for a week. His home is a slightly elevated crib in the cardiac unit of the children’s hospital. A mobile above his bed plays classical music, lullabies, or white noise. When we stop by for a visit, he looks up at us with his big brown eyes. The staff loves to hold him. Last we saw, they had dressed him in a Mickey Mouse sleeper.

Emmanual has an n-g tube threaded through his right nostril and esophogus into his stomach, which delivers him formula at the rate of an ounce an hour. As he only weighs nine pounds, the constant feeding is an effort to fatten him up before surgery. Emmanual is always gripping a pretzel stick, which he holds to gnaw on and for comfort. He also has been eating applesauce, but doesn't like to suck. This little boy will likely be discharged to a host family on Monday, as the feeding can be done in a home setting.

Emmanual doesn’t have HIV, but he may have TB and sickle cell. The TB is curable and the sickle cell is treatable, especially in the United States where Emmanual will one day permanently live. He is available for adoption, and a family from Washington State has decided to make him their son. They will be visiting Emmanual while he is in Cleveland.

Thursday, January 05, 2006

Mr. Jean-Baptiste:

Jackson has been at The Cleveland Clinic for more than a week. The contrast between this marvel of this medical, technological and architectural facility and anything in Haiti except maybe the Hotel Montana can hardly be overstated. The International Center is located in a beautiful hotel adjacent to The Clinic. The polished granite floors Jackson stared down at, the fancy rolls and fruit we were offered during the check in process, and the personal attendant assigned to us bespeak the amount of money that flows into The Clinic from paying international patients. As one of the charity patients, though, Jackson is receiving the same attention.

The conscientious, excellent attention continues once Jackson is admitted to the hospital. He is has been on three different floors, and is currently on a step down unit while he awaits surgery. He has had numerous pre-op procedures including two echocardiograms, cardiac cath, and multiple blood tests and medicine regimens. All of the testing and medical procedures are to get Jackson as strong as possible for surgery and then to give the surgeon as much knowledge as possible about Jackson’s heart so that surgery goes as smoothly as possible.

Elaine, a physician’s assistant with the cardiac surgeons, met with us last night to go over the plan for Jackson. His surgery is tentatively scheduled for Monday. Like almost all of the medical personnel who have seen Jackson, she can hardly believe the condition of his heart. “The surgeon is Croatian and he knows Jackson doesn’t really have a chance without surgery. We want to give him as good a chance as possible,” said Elaine. “We want to provide him a family here while he is at Cleveland Clinic and surround him with as much love as possible,” she continues. “I have two prayer groups praying for him.”

As John fills Elaine in on some of Jackson’s history, her eyes tear up. People at The Clinic are very touched by Jackson. He is quiet and undemanding, very sick but uncomplaining. Today when John was in the echo lab, the technicians pulled up Jackson’s echo. They didn’t think the state of his heart was really compatible with life. Yet Jackson lives on.

None of us is unaware of the huge risks that Jackson faces going into the operating room. One of the big challenges will be getting his heart re-started after his valves are repaired and it’s time to take him off the bypass machine. But he can’t continue to live like he has been.

We are impressed with the medical skill of the people at The Cleveland Clinic. But we are equally impressed by the personal care they are showing to Jackson. It was so different in Port-au-Prince where he was a sick person whom people passed by and for whom there was really nothing that could be done. On the white board above one of Jackson’s beds was written his name, as he had never been called before: Mr. Jean-Baptiste.

Sunday, January 01, 2006

Toussaint L’Overture: A Name Too Good for the PAP Airport

I’m not technically live from Haiti anymore. However, I have a few more posts to write about our experiences there and also in Cleveland where Jackson awaits surgery.

After all my dread of Haitian immigrations and the U.S. consulate, the most trying part of the day turned out to be the PAP Airport. It’s a dispiriting place under the best of circumstances: too many men have been authorized as sky caps and they furiously compete for your business, to the point of ripping the suitcases out of your hands. It’s Darwinistic and dehumanizing for them and for us.

A complete sense of apathy and incompetence envelopes the airport and this combined with the urgency of people who want to leave Haiti, now, make for an unpleasant experience. There are too few ticket agents and passengers mill in lines, not sure where to go next. It’s no wonder the Department of Homeland Security has signs posted all over U.S. airports stating that the airport in PAP doesn’t meet adequate security standards.

We get Jackson a wheelchair immediately, and the skycaps shunt us off to one side, assuring us we will be seen soon. The lines aren’t moving though, and John has to go intervene, cutting in front of some gran manje, saying, “We’ve got a sick boy here.” Then the ticket agent can’t find Jackson’s name in the computer. Eventually she does, and we go through customs and two more x-ray machines into the waiting area, only to find the 3:20 flight is delayed for an hour and a half. Gran manje, which literally translates as big eaters, is a disparaging term for upper class Haitians.

This delay means that when we get to Miami, we have to move quickly through the airport to make our connecting flight. Fortunately, a wheelchair is waiting for Jackson at the door of the plane and the woman who is pushing it is inordinately good. We have to walk at least a half a mile, possibly more, and I am not exaggerating, to customs, where we breeze through and John doesn’t even get asked if he’s ever lived in Arkansas, like he usually does. We then claim our luggage, have it x-rayed and then rechecked. Our attendant knows where our next gate is, in a far corner of the airport. We arrive at boarding time.

We are flying in a small jet to Cleveland and have to take a bus across the tarmac to our plane. Jackson has been holding his own, but I can tell he’s spent and especially uncomfortable on the planes; he wants to put his head back. But already, he can tell he’s not in Haiti: people are very nice to him and wish him well. The flight to Cleveland is cramped but uneventful. At the airport, The Clinic, as all Clevelanders call it, has arranged to have someone pick us up and take us to a hotel near the hospital. We get to bed at 12:30 am with a 6 am wake up call. Jackson and John fall asleep immediately, but it’s another sleepless night pour moi.