Religion & Ethics NewsWeekly: Micro Preemie Ethics / Sarajevo Haggadah

Bob Abernethy

Coming up, modern medical technology can keep premature and critically ill babies alive, but at what cost? Betty Rollin talks with caregivers about the life and death ethical issues they face. Also, Christians celebrate Holy Week, and for Jews it's Passover. Kim Lawton looks at the Sarajevo Haggadah, a rare 600-year-old Passover manuscript that many see as a symbol of the Exodus story.

Bob Abernethy

Welcome. I'm Bob Abernathy. It's good to have you with us. This week, leading up to important religious observances in several major religions. Violence was a prominent theme this week. At the Vatican, Pope Francis called for prayers about the conflict in Syria. He urged Syrian leaders to, quote, silence the weapons and put an end to the violence. He made the remarks while condemning the assassination of Frans van der Lucht, a 75-year-old Dutch Jesuit priest in Syria who was killed this week by unidentified gunmen in the city of Homs. After war broke out in 2011, van der Lugt stayed behind to help homeless Muslims and Christians. He had worked in Syria for nearly 50 years. Faith leaders also addressed violence on several fronts here in the U.S. Prayer vigils were held in Pennsylvania for victims of Wednesday's stabbing rampage at a high school near Pittsburgh. A 16-year-old student was taken into custody after wounding 22 people.

Bob Abernethy

At a conference in Oklahoma City, representatives of the Episcopal Church denounced what they called the epidemic of violence and discussed ways to foster peace. Archbishop of Canterbury Justin Welby spoke. It was his first official visit to the U.S. since becoming the archbishop last year. Masses and other solemn ceremonies were held to mark the 20th anniversary of the genocide in Rwanda. Violence swept Rwanda in 1994 when Hutus attacked Tutsis and moderate Hutus, leaving nearly a million dead. The anniversary was also an occasion for religious leaders around the world to call for reconciliation. Pope Francis encouraged the church in Rwanda to persevere in healing. Also this week, Pope Francis had some strong words about the clergy sex abuse crisis. He said he felt called to personally take responsibility for the evil some priests committed. He asked for forgiveness and promised that the church will not retreat. on reforms.

Bob Abernethy

Four presidents, civil rights icons, and religious leaders gathered at a three-day summit in Austin to mark the 50th anniversary of the passage of the Civil Rights Act of 1964. Former President Jimmy Carter was among the speakers. He said America has more work to do on race relations and highlighted the mistreatment of women as the next priority for the civil rights movement. A new survey from the American Bible Society shows that skepticism toward the Bible is on the rise in the U.S. According to the annual study, the most devoted readers of the Bible are now matched in number by those who doubt the Bible is of divine origin, 19 percent for both. Skeptics have grown by 10 percent since 2011, while the number of committed readers has stayed the same. The growth of skeptics is strong among millennials, those between 18 and 29.

Bob Abernethy

We have a special report today on the agonizing decisions being made by doctors, families, and chaplains looking after premature and critically ill newborn babies. Modern medical technology has enabled those caring for these newborns to keep them alive, but often That means surviving with devastating problems. Betty Rollin reports from Kansas City.

Mother of an infant with hydrops discussing prognosis and survival

You can open your eyes. She has been through a lot. She's come a long way because at first the statistics aren't very good with high drops babies. But she made it through that and now she's just growing, waiting for her heart surgery to shaft up. I shouldn't put in here in a few weeks. And how do you feel about

Betty Rollin

all of this?

Mother of an infant with hydrops discussing prognosis and survival

It's very tough to see your child struggle. At any point,

Betty Rollin

if you knew how sick she was, would you have let her go?

Mother of an infant with hydrops discussing prognosis and survival

No. No. No. Because? I feel like she's a miracle. What's a miracle?

Mother of an infant with hydrops discussing prognosis and survival

I feel like she's perfect.

Betty Rollin

Two weeks ago, Jasper, who is now three months old and has a rare genetic disease, was near death but survived. He is going home soon. but his future health is uncertain.

Jasper's mother discussing his medical needs and her opposition to abortion

He has a heart condition. He has a murmur, but it's slowly closing. With the G tube, they're thinking that maybe another five, six months we'll do another feed study. But until then, he can't have anything by mouth.

Betty Rollin

For both of these mothers, who knew how sick their babies were before birth, abortion was not an option.

Jasper's mother discussing his medical needs and her opposition to abortion

I just have always had strong beliefs against people who, if it's not a perfect child, they would abort. And to me, Jasper is perfect.

Betty Rollin

What if he winds up, for a good portion of his life, very sick? How will you feel then?

Jasper's mother discussing his medical needs and her opposition to abortion

I will be. the mother that he deserves. I will be by his side through the whole thing like I have been. We all know that he's a little miracle and we wouldn't change anything about him.

Betty Rollin

Both the survival and health of these babies have a lot to do with how premature they were at birth. Dr. John Lantos is both a pediatrician and ethicist at the hospital.

Dr. John Lantos

In 23 weeks, about half of babies die. In 24 weeks, maybe 30% of babies die with some variation by race, gender, and center. And the big question today is, of the survivors, how many survive without devastating neurologic impairments or other chronic medical problems?

Betty Rollin

Problems like brain damage, cerebral palsy, Down syndrome,

Betty Rollin

Karen Dow was born at 26 weeks, weighing 1 pound 12 ounces. She has severe bowel and digestive problems and already has had one surgery and will soon have another.

Becky Crouse

What's been the hardest part of all of this? Seeing her have

Betty Rollin

to go through this and not being able to comfort her. One of the torments for both parents and doctors is the question of how much the treatment itself is contributing to the baby's pain and suffering.

Dr. John Lantos

Sick babies in the NICU get between 10 and 20 painful invasive procedures per day. Needle sticks, shots of various things, new IVs need to get started, suctioning of their endotracheal tube. Narcotics themselves have risks. So it's a tightrope walk how much pain medicine to give in order to minimize the pain and suffering without causing more harm from the medication that's being used to treat the pain.

Betty Rollin

In most cases, the babies treated here will go home healthy and stay that way. But when the outcome is uncertain, the medical staff sees the choice of whether to treat as both a medical and ethical issue shared by the physicians and the family. But it is the family, usually the mother, who makes the ultimate choice. Dr. Brian Carter is a neonatologist and ethicist.

Mixed diarization: neonatologist Brian Carter and a NICU parent speaking about faith

I think personally the most difficult experiences have been those in which I can foresee a child suffering and a parent not really understand that the condition is fraught with suffering and insist upon treatments which are no longer treatments.

Betty Rollin

So what do you do in that situation?

Mixed diarization: neonatologist Brian Carter and a NICU parent speaking about faith

In that situation we talk about benefit and risk. And what's the usual outcome of that conversation? The usual outcome is the need for another conversation.

Betty Rollin

And what of cost? It varies, but for infants born at 25 weeks who spend an average of three months in intensive care, the total cost can run as high as $900,000. And usually there are medical costs after the baby is discharged. You had a busy day today. A very busy day. Religion often plays a role with both the parents and the doctors. God and I had some very serious conversations. In the sense that it wasn't that I doubted him,

Mixed diarization: neonatologist Brian Carter and a NICU parent speaking about faith

I was calling on him to do what I know he could do. I can cry out to God about them, and I do pray and talk to God about my bad days, believe me. I won't pretend to know absolutely the will of God.

Becky Crouse

Well, I just wondered if you'd like a prayer before you head out. I'm just going to touch your bed, Jasper, and

Betty Rollin

pray over you. The Children's Mercy Hospital's neonatal intensive care unit also has a full-time chaplain, Becky

Becky Crouse

Krause. My goal is to meet people where they are when they come here. And so sometimes that prayer takes the form of just getting them a cup of water Kleenex, if all they can do is cry, and just standing silently, and so much is just our presence.

Betty Rollin

Chaplain Krause finds that religious parents who were expecting a healthy baby are sometimes angry

Becky Crouse

at God. Anger is a good emotion, and to help them be able to channel that anger into, you know, voicing it. One of the things that I do personally and I recommend to parents is journaling. because it's a proven way to kind of help release those kind of feelings and just to normalize it to say it's okay to be very angry.

Betty Rollin

Both religious and spiritual support are given to the families of babies who die. Rachel Courtney knew that her baby Jack would have a short life but wanted it to be meaningful.

Rachel Courtney

He lived for three and a half days and the whole time we just held him and he was cuddled in our arms and we read to him and sang to him. All of our family and friends came in. There was no limitations on how many people or how much time they could spend.

Betty Rollin

Babies who have died are memorialized on a quilt and Children's Mercy Hospital continues to reach out to the parents. Doctors say the technology of treating very sick infants will continue to improve with a focus on genetic screening and fetal surgery. But with the improvements, the ethical questions may increase. For Religion and Ethics News Weekly, I'm Betty Rollin in Kansas City, Missouri.

Bob Abernethy

On our calendar, a full slate of religious observances. Jains around the world celebrate Mahavir Jayanti, their most important religious festival. Sikhs also observe one of their most important holidays, Vaisakhi, a spring harvest festival. Many Hindus also observe Vaisakhi as a time of renewal and rebirth. And as we noted, for the world's more than two billion Christians, this coming week is Holy Week. Most years, because of their different calendars, Eastern Orthodox and Western Christians observe the events of Holy Week on different days. But this year, it's the same for all. The week begins with Palm Sunday. On that day, according to New Testament accounts, Jesus entered Jerusalem riding on a donkey and was greeted by crowds waving palm fronds. They welcomed him as a conquering hero. there to overthrow Roman rule. Churches commemorate the day with their own Palm Sunday processions.

Bob Abernethy

As the week continues, the mood becomes increasingly somber. On Holy Thursday, Christians remember the Last Supper, or the final meal Jesus had with his disciples, which many believe was a Passover Seder. The day is also called Maundy Thursday, named for Jesus' command to his disciples to love one another. Many clergy wash the feet of their congregants, as the Gospels say Jesus did for his disciples at the Last Supper. In some churches, members wash each other's feet.

Bob Abernethy

Good Friday is the day of the crucifixion. Many Christians follow the Stations of the Cross or carry crosses in procession. remembering Jesus' carrying his own cross to the place where he was crucified.

Bob Abernethy

In Catholic and many Protestant churches, altars are stripped bare. Statues and crosses are covered to mark Jesus' death. The shrouds remain through Holy Saturday, also a day of mourning. Then, darkness gives way to light as churches celebrate the resurrection of Jesus on Easter Sunday or as it's called in the Eastern tradition, Pascha.

Bob Abernethy

For Jews, the eight-day celebration of Passover begins at sundown Monday. This week, as is the tradition, one of Israel's chief rabbis started Passover preparations by cleaning out notes and prayers wedged inside crevices in Jerusalem's Western Wall. Millions of people visit Judaism's holiest site each year, and many tuck written messages into the ancient stones. The rabbi clears them out and buries them twice a year, once just before Passover. Jews celebrate Passover with the Seder, the special meal commemorating their ancestors' exodus from slavery in Egypt. The Exodus story tells how God punished the Egyptians by killing their firstborn sons, but his angel passed over the homes of the Jews, which were marked with lamb's blood. Every element of the Seder symbolizes part of the story, and the book that guides the ritual is the Haggadah. Kim Lawton has a story about one of the most famous Haggadahs in the world, the Sarajevo Haggadah. named for the Bosnian city where it's now kept. It's a rare illuminated manuscript that was created more than 600 years ago in Spain. Many see its own story as a symbol of the Exodus.

Kim Lawton

At the Arsenal Center for the Arts in Boston, a multimedia performance called Music of the Book is telling the story of the Sarajevo Haggadah and its journey of survival from 14th century Spain the expulsion of the Jews and the Inquisition, through the Nazi Holocaust and the Bosnian War. Sarajevo-born composer Maryma Clucho says the Haggadah's story touches Jews,

Merima Ključo

Christians, and Muslims alike. It went through so many different cultures and so many different people took the care of the book and helped it survive.

Kim Lawton

The Sarajevo Haggadah was created in the mid-1300s in Spain during a period when Jews, Christians, and Muslims lived together in relative harmony. Religion professor Mark Michael Epstein has a rare facsimile of the Haggadah.

Marc Michael Epstein

It is highly probable that many Jews owned beautifully illuminated manuscripts, but we're left with only a very small percentage of what was actually made.

Kim Lawton

The manuscript's rich illuminations are similar to those in medieval Christian books.

Marc Michael Epstein

You see how the divine is indicated here with gold flames or gold rays.

Kim Lawton

In addition to scenes from the Book of Exodus, the Illuminations also depict scenes from Genesis. There's the creation story, ending with a Jewish man resting on the Sabbath. There's Adam and Eve, Jacob's dream of a ladder to heaven, and of course the Exodus out of Egypt and the Passover celebration that commemorates it.

Marc Michael Epstein

Here, the bitter herb is illustrated as romaine lettuce. It's the head of romaine lettuce. Romaine lettuce was preferred because when you start chewing on a piece of romaine lettuce, it tastes like salad. You know, you feel like, oh, I'm eating a salad. But if you keep chewing on it, it becomes more and more bitter. And that's the experience of slavery.

Kim Lawton

Epstein says the family that commissioned it likely had themselves put into the book.

Marc Michael Epstein

This is very important because the tradition of Jews on Passover is that one should see oneself as if one had personally come out of Egypt. And by putting oneself visually into the art, one has an opportunity to do this.

Kim Lawton

Included at the Seder table is an intriguing figure, a woman with dark skin. Some believe she was a servant, although she's seated with the family. The illustrations paint a vivid picture of medieval Jewish life. Doodles and red wine stains on the pages show the Haggadah was well used at Passover celebrations.

Marc Michael Epstein

The Haggadah, then as now, was used in a kinetic environment. It was used at a seder table with grandparents and grandchildren and children screaming and people saying, when are we going to eat, right? This is the history of all Haggadot, the Sarajevo Haggadah, not the least among them.

Kim Lawton

The Sarajevo Haggadah has captured the imagination of millions, including Pulitzer Prize-winning author Geraldine Brooks.

Geraldine Brooks

It is a magnificent work of art, and we know nothing about the artist, the painter, who created those beautiful illuminations.

Kim Lawton

Brooks wrote People of the Book, a fictional story expanding on real events surrounding the Haggadah, going back to when it was created.

Geraldine Brooks

This was a really thriving affluence comfortable community and you get that real sense of a community part of a of a bigger community in in the illustrations the security of their life and you realize what a shock it must have been for them to find that this really was so fragile

Kim Lawton

in 1492 jews were expelled from spain and were able to take out only a few books like the hagata

Marc Michael Epstein

because they were small and portable people took them with them and concealed them and were able to take them out as the great treasures of their family, which of course have become the great treasures of the Jewish people and of the world.

Kim Lawton

A notation in the book places it in Italy in 1609, where it was examined and approved by a Catholic inquisitor.

Marc Michael Epstein

This is the signature of the inquisitor who looked over the book and found nothing theologically objectionable in the text, let's say. We're not sure if he examined the illustrations.

Kim Lawton

In 1894, records show that a man named Joseph Cohen sold the Haggadah to the National Museum in Sarajevo. During World War II, the Nazis tried to take it from the museum, but a Muslim librarian hid it from them. His widow told Geraldine Brooks it was kept safe in a mosque. The book was back in the museum by 1992, when the city came under heavy shelling during the Bosnian War. Another Muslim librarian risked his life to retrieve the manuscript and put it in a bank vault.

Merima Ključo

Coming from Bosnia, Sarajevo Haggadah is kind of a symbol of coexistence and symbol of caring for the culture that's also your culture, but also culture of your neighbors.

Kim Lawton

Merima Kluco read Brooks's book and was inspired by how the Haggadah's story reflected her own experiences in the Bosnian War, something she tried to convey through her music.

Merima Ključo

I had my own exodus about 20 years ago when Bosnia was attacked and I was in the war for two years. So I also know what does it mean to feel the violence and what does it mean to hide and to leave your own country and to go somewhere else and build your own life again.

Kim Lawton

Alexandra Buncic was also born in Sarajevo and displaced during the war. She's now a Fulbright Fellow at Rutgers University doing her thesis on the Sarajevo Haggadah. Buncic is one of the few historians who's been allowed to touch and study the

Aleksandra Bunčić

actual manuscript. I do remember how one of the curators carefully opened the door and took it as his caring child, and he put it and presented to me. That is a very emotional moment in my private and my professional history.

Kim Lawton

The Haggadah is kept in a special case inside the National Museum in Sarajevo, but the museum has been closed since

Aleksandra Bunčić

late 2012. Unfortunately, after 125 years, the museum is now closed.

Aleksandra Bunčić

due to political reasons and there is no proper funding, which is the main major problem and one of the reasons why the museum is closed today.

Kim Lawton

Despite its uncertain future, Brooks says the Sarajevo Haggadah's story is one of ultimate hope.

Geraldine Brooks

Even though we succumb so easily to this demonization of the other, there are always a few people who are able to stand apart and say, no, not this way. What unites us is greater than what divides us. And that gives me hope for us as a species.

Kim Lawton

For Jews and so many others, the Haggadah's journey from times of persecution to survival and hope is a poignant echo of the Exodus story in the manuscript's illuminated pages. I'm Kim Lawton in Boston.

Bob Abernethy

Finally, good news about Religion and Ethics News Weekly. Our website has been nominated again for two Webbys, the prestigious award from the International Academy of Digital Arts and Sciences, honoring the best work done on the web. One of the awards is called the People's Voice, and you can help us win it by voting for us. Go to our website at pbs.org to find out how. That's our program for now. I'm Bob Abernethy. You can follow us on Twitter and Facebook and watch us anytime on the PBS app for iPhones and iPads. And visit our Webby-nominated website, where there's always much more, including more of Kim's interview of Rabbi Mark Michael Epstein. You can also listen to or watch each of our programs. Join us at PBS.org.

Bob Abernethy

As we leave you, Miserere by Gregorio Allegri, written for Holy Week and performed at the Washington National Cathedral.