Catholic News 2

(Vatican Radio) The Permanent Representative of the Holy See to the Organization for Security and Cooperation in Europe (OSCE), Msgr. Janusz S. Urbanczyk, addressed the Organization's High Level Meeting on the 20th Anniversary of the Hague Recommendations on the Education Rights of National Minorities, taking place Wednesday and Thursday of this week in Geneva.

Below, please find the official English version of his prepared remarks

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Mr. Chairman,

The  Holy  See  takes  this  opportunity  to  reiterate  its  gratitude  to  the OSCE  High  Commissioner  on  National  Minorities  for  her  role  in  providing early warnings  and, as appropriate, early action  in  relation  to tensions involving national minority issues that have conflict potential within the OSCE area.

We are gathered here today to reflect on the Hague Recommendations which  were  not  intended  to  be  comprehensive  but  to  serve  as  a  general framework whose goal was to “assist States in the process of minority education policy development”.

At this point in human history, when various negative forces threaten the legitimate aspirations for peaceful co-existence that exist in many regions of the world, my  Delegation  would  like  to  use  this  opportunity  to  explore  the responsibility shared by all participating States, as well as  by  civil society, in doing everything possible to educate  their  people, especially the young,  so that they  become  peace-makers  and  promoters  of  true  tolerance  and  nondiscrimination.

The  Holy  See  wishes  to  underline  the  importance  of  the  religious identity of national minorities. It  has a  distinctive duty to insist on the role of religion, not  for  purely  partisan reasons  nor  because it  is  uninterested in other aspects  of the issue, but because  it feels that  religion  has left, and  continues to leave,  a mark in  the history, identity, culture and social life of our societies and communities.

Education, especially at school, plays a great role in  the  promotion  of religious tolerance and non-discrimination because it addresses  the roots of the phenomenon. Mingling with students who belong to different religions is in itself a great help to understand the unity of mankind. Moreover, it is  important that schools  teach about different religions and  allow  each student to manifest and  express plainly and openly  her or his belief. Knowledge about  the  other’s religion can reduce harmful misunderstandings and stereotypes.

Educational programmes should be developed and strengthened in order to promote a better understanding and respect for different cultures, ethnicities and religions. These programmes should also hand on some  paramount  values like  the dignity of every person and the solidarity amon g peoples. Education in respect  for  human rights and fundamental freedoms is no less important, both for students at all levels,  as well as for  students  attending military, police and public service schools.

According  to  the  indivisibility,  interdependence  and  interrelation  of human  dimension  commitments,  in  developing  and  implementing  these programmes,  participating States should always respect the right of parents to ensure  the  religious  and  moral  education  of  their  children  in  conformity with their own convictions, a right that is enshrined in both the International Covenants on Human Rights as well as in the OSCE commitments.

In this regard,  it should be noted that such parental right s  do not imply only  the  right  of  parents  to  choose  their  children’s  schools,  other  than  those established  by  public  authorities,  or  the  rights  to  establish  and  manage alternative  educational  institutions;  it  also  requires  States  to  ensure  that instruction  in  public  schools  does  not  pursue  an  aim  of  indoctrination  and  to ensure that  children  are not  forced to attend  lessons  that are  inconsistent with the convictions of their parents.

Many States, in fact, provide –  or intend to provide  –  in public schools, compulsory  classes  on  ethical  or  religious  subjects.  Such  instruction  is appreciated but it should be  borne  in mind that States cannot pursue an aim of indoctrination and that children shouldn’t be forced to participate in courses that are  not  consistent  with  the  convictions  of  their  parents.  Therefore, it is preferable  that  such  teachings  be  facultative,  and,  when  they  are  compulsory, participating States should provide non-punitive and non-discriminatory opt-out possibilities.

In  the  Catholic  Church’s  view,  all  people  of  whatever  race,  nation, religion,  sex  or  age,  in  virtue  of  their  dignity  as  human  persons,  have  an inalienable right to education. This education should be suitable to the particular destiny of the individual person, and should be conducive to fraternal relations within  diverse  societies  in  order  to  build  stable  multi-ethnic  societies  and promote true unity and peace between the countries of the OSCE region.

Children and young people who are molded by an education oriented towards respect  for  national and religious minorities today, will be the building blocks  on  which  the  society of tomorrow  can  be  constructed.  But  in  order  to reach  that  goal, there is a long way to go, since building a  just  and  peaceful society: “requires  a  wholehearted  commitment  to  eliminate  not  only  evident discrimination  but  also  all  barriers  that  divide  groups…The increased awareness… regarding the situation of minority groups constitutes for our own times  a  hopeful  sign  for  the  coming  generations  and  for  the  aspirations  of minority  groups  themselves...  respect  for  minorities  is  to  be  considered  the touchstone of social harmony and the index of the civic maturity attained by a country and its institutions”.

Finally, my Delegation is confident that, through the commitments of the OSCE and the efforts of its High Commissioner on National Minorities, participating States will make progress in ensuring that national minorities enjoy a quality education that will be a helpful tool in preventing conflicts, by inculcating values of tolerance, pluralism, respect and international and intercommunal harmony, capable of preserving regional peace and security.

Thank you, Mr. Chairman.

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(Vatican Radio) Pope Francis has sent a message to the Jewish community of Rome as it prepares to celebrate the feast of Passover.

The  feast, which commemorates God’s delivery of Israel out of Egypt and slavery, begins at dusk on Friday 22 April and ends on Saturday 30 April. In his message addressed to Dr. Riccardo Di Segni, the chief rabbi of Rome, the Holy Father said that God will accompany the Jewish community with “an abundance of blessings”, protecting them and bestowing peace upon everyone.

Before ending his message, the Pope asked Di Segni to pray for him, and he prayed that God will allow the Catholic Church and the Jewish community to grow in friendship.

See the Pope’s full message below:

To the Chief Rabbi of Rome, Doctor Riccardo Di Segni,

In remembering with renewed gratitude our meeting on 17th January, when I was cordially welcomed by you and by the Jewish Community of the city in the Great Synagogue, I wish to express my most heartfelt wishes for the feast of Passover. It points out that the Almighty has released his beloved people from slavery and brought them to the Promised Land . May God also accompany you today with the abundance of his Blessings, protect your community and, in His mercy, bestow peace upon everyone. I ask you to pray for me, as I assure you of my prayers for you: may the Almighty allow us to be able to grow more and more in friendship.

Franciscus, PP.
21st April 2016.

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(Vatican Radio) Her Majesty Queen Elizabeth II turned ninety on Thursday. The last time she came to the Vatican it was to meet Pope Francis together with her husband Prince Philip on the 3rd of April 2014. It was an informal meeting which  marked her first encounter with this Pope. One which was a far cry from the formality of her  first encounter with a  Pope in the Vatican.

To mark this special birthday Veronica Scarisbrick steps back in time and shares with you echoes of the first visits of the Queen to the Vatican:

The first time Her Majesty Queen Elizabeth II crossed the threshold of the Vatican it was 1951, she was still a Princess and the Pope to receive her in audience was Pius XII. Former Archbishop of Westminster Cardinal Cormac Murphy O'Connor was studying for the priesthood at the Venerable English College at the time and shares his memories of this special moment with Philippa Hitchen: “When I met her afterwards she said she was quite terrified, Buckingham Palace is all very well but it doesn't compare with the Vatican..."

The second time she was received in audience by a Roman Pontiff it was 1961, this time the Pope was John XXIII who's soon to be canonised by Pope Francis. Rosminian Father John Charles-Roux once shared with Veronica Scarisbrick his memories of that event which took place in the context of the renaissance splendour of the papal court of the time. A splendour which according to him Pope John seemed to enjoy as he says: "...he used the room of the Tronetto ' which Pius XII never used...when he received the Queen and the Duke of Edinburgh there was a display of the court that amazed all the English people. The Queen and the Duke came back absolutely thrilled by the display of that Renaissance Court in its full splendour..."

In this programme Veronica Scarisbrick also brings you an article written by the late John Grigg, then still Lord Altrincham who on the contrary describes an audience with John XXIII as more homely than regal: "Pope John XXIII makes even an audience in Saint Peter's seem like an intimate family occasion, a party thrown by a benign old man for the innumerable children who look for security, comfort and guidance. Pope John has the demeanor of a good country priest with bubbling zest and bonhomie with no airs or graces. Borne in the 'sedia' with thousands of applauding votaries he responds to their enthusiasm in kind. They love him, he obviously loves them.....He does not suggest by his manner that he is any nearer to the heavenly mysteries than they are. He settles back comfortably in his chair and talks to the vast crowd around him for all the world as if he were talking to one old friend by his fire side. this spontaneity warms the heart as studied and exalted rhetoric never can..."
 

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(Vatican Radio) Pope Francis on Thursday urged Christians always to memorize the way and circumstances in which God has been present in our lives, saying this helps to strengthen our faith. His words came during his homily at Mass celebrated at the Santa Marta residence. 

Taking his inspiration from the day’s readings, the Pope reflected on the need for Christians to look back and store in their memories all the key moments and signs of God’s presence in their lives. He said we must memorize both the beautiful things done by God as well as the obstacles and rejections because God accompanies us and is not frightened off by our wicked deeds.

“We must look back to see how God has saved us, follow – with our hearts and minds – this  path with its memories and in this way arrive at Jesus’s side. It’s the same Jesus, who in the greatest moment of his life – Holy Thursday and Good Friday, in the (Last) Supper - gave us his Body and his Blood and said to us ‘Do this in memory of me.’ In memory of Jesus. To remember how God saved us.

Pope Francis went on to explain how the Church describes the Sacrament of the Eucharist as a “memorial,” just as in the Bible the book of Deuteronomy is ‘the book of the Memory of Israel.’ And we must do the same in our personal lives, he said.

“It’s good for the Christian heart to memorize my journey, my personal journey: just like the Lord who accompanied me up to here and held me by the hand.  And the times I said to our Lord: No! Go away! I don’t want you! Our Lord respects (our wishes).  He is respectful.  But we must memorize our past and be a memorial of our own lives and our own journey.  We must look back and remember and do it often. ‘At that time God gave me this grace and I replied in that way, I did this or that… He accompanied me.’ And in this way we arrive at a new encounter, an encounter of gratitude.”

Concluding his homily, the Pope said our hearts should give rise to a sense of gratitude towards Jesus who never stops accompanying us ‘in our history.’  How many times, he admitted, have we closed the door in his face, how many times have we pretended not to see him and not believe that He is by our side. How many times have we denied his salvation…  But He was always there. 

“Memory makes us draw closer to God.  The memory of that work which God carried out in us, in this recreation, in this regeneration, that takes us beyond the ancient splendour that Adam had in the first creation. I give you this simple advice: Memorize it!  What’s my life been like, what was my day like today or what has this past year been like? (It’s all about) memory.  What has my relationship with the Lord been like?  Our memories of the beautiful and great things that the Lord has carried out in the lives of each one of us.”

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(Vatican Radio) Pope Francis told members of Italy’s Diocesan Caritas chapters their mission is to express “concrete love for every human person, with a preferential option for the poor.”

The Caritas network of Italy is holding its national convention in Rome. The local chapters are part of the international Caritas family, which helps the poor, vulnerable, and excluded across the world.

“Given the challenges and contradictions of our time, Caritas has the difficult – but fundamental – task of making sure charitable service become everyone’s task; that is, the whole Christian community becomes the subject of charity,” said Pope Francis.

“This is the main object of your existence and your actions: to be a stimulus and a soul so that the whole community grows in charity, and knows how to discover new ways to be close to the poorest, to be able to read and confront the situations that oppress millions of our brothers and sisters –  in Italy, in Europe, and in the world,” continued the Holy Father.

Pope Francis then noted the importance of properly recruiting and training Caritas volunteers for their various roles, and acknowledged the “time, resources, and abilities” each volunteer invests.

“Faced with the global challenges that sow fear, guilt, financial speculation – even on food, environmental degradation, and war,” – the Holy Father said – “it is necessary, along with the daily work on the ground, to continue efforts to educate on the respectful and fraternal encounter between cultures and civilizations; and the care of creation, for an ‘integral ecology’.”

The Pope said this includes advocating to civil institutions and promoting “appropriate legislation” in favor of the common good.

“I encourage you not to tire of promoting, with tenacity and patient perseverance, communities who possess a passion for dialogue, to experience conflicts in an evangelical way, without denying them but making them opportunities for growth and reconciliation,” Pope Francis said.

“May you always speak proudly of your desire to go to the causes of poverty, and try to remove them; of your efforts to prevent exclusion; to affect the mechanisms that generate injustice; to work against any structure of sin,” he said. “This begins in the parishes: It is the precious work and capillaries of the parochial Caritas chapters, which must continually spread and multiply through the territory.”

Pope Francis also encouraged the local Caritas chapters to continue to help immigrants, both with solidarity and to help them integrate into the community.

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The Catholic Bishops of Zambia will this month host a high-profile meeting that will assess and highlight the impact of large-scale mining and agriculture on the environment. The meeting set for the 25 to 26 April will be attended by Cardinal Peter Turkson, President of the Pontifical Council for Justice and Peace. 

The two-days conference will among other things seek to popularise and create awareness on “Laudato Sì,” the encyclical of Pope Francis on the care of the earth. The announcement was made Thursday by the ZEC Secretary General, Fr. Cleophas Lungu in a statement released to Vatican Radio by the communications officer, Mwenya Mukuka.  

The ZEC Secretary General said Cardinal Turkson will deliver a keynote speech at the conference. 

Zambia is reeling from the effects of climate change manifested in reduced rainfall and unpredictable weather patterns that have resulted in crop failure and water shortages. The country’s major hydroelectric project at Kariba dam is not only facing serious structural challenges but has also seen a significant drop in the reservoir’s water levels due to drought.

The state’s power utility company, ZESCO has been rationing electricity throughout the country. The massive load-shedding by ZESCO has led to the cutting down of more trees for charcoal production thus compounding global warming.

According to Zambia’s Bishop of Mongu Diocese, Evans Chinyemba, the Western province, in particular, is under siege from all manner of indiscriminate logging and timber traders.
 
The ZEC Secretary General, Fr. Lungu is equally worried about the cutting down of trees in the country.

“Zambia has fertile arable land which is very attractive to agriculture. We have seen people cutting a lot of trees for large scare farming which has had an effect on the environment. This scenario must be addressed and we want to help bring about behaviour change,” Fr. Lungu noted.     

The effects of large-scale mining, especially of Copper, will also be considered at the conference. 

 “We are excited as a Church to host this conference. As you know, Zambia’s economy is driven largely by the mining sector, and so we want to make awareness of its impact on the environment.” He added, “We shall collaborate with others during the conference on what we should do together to care for the environment” Fr. Lungu said.

Several delegations from the continent of Africa have also been invited to attended the Lusaka meeting. 

(Fr. Paul Samasumo, VR)
Email: engafrica@vatiradio.va

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(Vatican Radio) Elizabeth II, the Queen of the United Kingdom and Head of the Commonwealth, today celebrates her 90th birthday.

Many people have paid tribute to Her Majesty. Prime Minister David Cameron has called the world’s oldest reigning monarch a “rock of strength” for the nation. Her son, Prince Charles, said, “She, like all of us, can reflect on a life that has inspired and encouraged millions of people in the United Kingdom, the Commonwealth and around the world.”

The President of the Catholic Bishops’ Conference of England and Wales, Cardinal Vincent Nichols, also paid his own tribute on Twitter: “The Queen offers us an example of dedicated and enduring service. #HappyBirthdayYourMajesty We look forward to the celebrations.” 

Her Majesty is no stranger to social media. Earlier today, she tweeted, “I send my best wishes to those who are celebrating their 90th birthday...on this shared occasion, I send my warm congratulations to you."

The 90 year old monarch was born to the Duke and Duchess of York in 1926. Her father would later become King George VI. She undertook public duties during World War II, and married Philip, Duke of Edinburgh, in 1947. She ascended to the throne in 1952 after her father died, but her coronation did not take place until 1953.

Britain’s longest-lived monarch has met a number of popes at the Vatican over the years, including Pope Saint John XXIII. She has also met popes in the UK; she met Pope Benedict XVI during his state visit in 2010 and Pope Saint John Paul II during his pastoral visit in 1982. Most recently, she met with Pope Francis during a visit to Rome in 2014.

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The four Missionaries of Charity nuns killed in Yemen had courage to defend their faith, Bishop David Kamau the Auxiliary Bishop of Nairobi said recently in Nairobi.

The bishop was speaking at the Holy Family Basilica, Nairobi, during a Requiem Mass for the repose of the souls of the late Sr Mary Ansem (India); Sr Mary Judith (Kenya); Sr Mary Marguerite (Rwanda); and Sr Mary Reginette (Rwanda).

The four were among 16 persons killed when terrorists attacked the Mother Teresa home of the aged in Aden, Yemen on 4 March, this year.

“Today we are commemorating the death of the Sisters who died in the course of duty, of defending the faith and living their baptism,” said Bishop Kamau in his homily.

“In our baptism, we are mandated and given a mission. Let us pray that we may carry that mandate and responsibility of keeping the faith,” he added. 

Bishop Kamau observed that in the history of the Church, God uses ordinary people to defeat and shame the strong noting that, “Our sisters were just ordinary individuals who went through the baptism of Jesus” and that “this is an example to follow not just as missionaries but even as Christians.” 

Bishop Kamau further encouraged the Kenyan parents of the late Sr Mary Judith (Anastacia Kanini) to be proud to have had a brave child persecuted for her faith.

“She had the option of coming back but decided to stay there...what courage and what an example of faith! Let us pray that we may have that kind of courage,” he said.

During the Requiem Mass Sr Mary Carmeline (Bernadette Nzembi) another Missionary of Charity sister who was killed 16 years ago in Sierra Leone was also remembered.

(CISA -Nairobi, Kenya)

Email: engafrica@vatiradio.va

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Washington D.C., Apr 21, 2016 / 03:01 am (CNA/EWTN News).- They're the last words any expecting parent wants to hear. But though it's rarely discussed, thousands of couples every year get the news: that their unborn child has a severe, life-threatening condition.

And what's more, few receive the resources, support and information they need to carry their child to term.

“In your mind you have this outcome that you're going to have a baby,” said Dianna Vagianos, “and then you find out you will have a baby, but it's going to die.”

Dianna's daughter, Mary Rose, died shortly after her birth in 2014.

Although the process of her daughter's pregnancy, birth and death was difficult and painful, there was still beauty and even joy, she told CNA. In talking to other parents who offered counsel and to Isaiah's Promise, a peer support ministry for parents facing difficult prenatal diagnoses, Dianna found peace.

“The way that they acknowledged the unborn child and the way they gave us permission to still be joyful, even though the child would probably die,” she said.

“If I could give one thing to a pregnant woman it would be that it's going to be okay,” Dianna said, offering her own advice to parents facing a life-limiting prenatal diagnosis for their child. "The baby's going to do what it's supposed to do."

“For everyone I know (in the same situation), the baby has died so peacefully.”

According to the Centers for Disease Control, one in three babies is born with a birth defect, and birth defects account for one in five infant deaths. Some defects can be detected on routine prenatal ultrasound screenings, or with a screening of the mother's blood. Various conditions can also be diagnosed through screening procedures such as amniocentesis, which takes a small amount of amniotic fluid from the womb, high-resolution ultrasounds or echograms. There's also a chorionic villus sampling, which takes a small amount of a baby's placenta for examination. If results come back abnormal, parents may be referred to a specialist for diagnosis, and in some cases, prenatal treatment, or preparation for treatment after birth.

However, some conditions have no cure.

The percent of babies who are terminated after their parents receive a prenatal diagnosis varies from condition to condition, but for some diagnoses with poor prognoses, such as Trisomies 13 and 18, anencephaly and certain kidney diseases, termination rates can be as high as 80 or 90 percent of those diagnosed.

At 21 weeks of pregnancy, Dianna received Mary Rose's diagnosis: the baby had Trisomy 18. Like other trisomies, such as Down Syndrome –Trisomy 21– and Trisomy 13, Trisomy 18 develops when a baby inherits an extra, third, copy of a given chromosome – in this case, Chromosome 18. The extra genetic information results in heart and digestive system defects, difficulty breathing, microcephaly, and a range of physical malformations. Nearly three-quarters of children diagnosed with Trisomy 18 die in utero. Of those infants who survive to birth, most die within hours, days or weeks of birth. Less than ten percent of children with Trisomy 18 survive past their first birthday.

When doctors examined Mary Rose during a routine ultrasound visit, they found several anomalies, most notably that Mary Rose was small, and her fingers were crossed – a marker for Trisomy 18.

“As soon as they did the ultrasound, that’s when they offered me an abortion,” Dianna told CNA.

While providing information on termination, “that’s the first time I felt her move,” she recalled. While not completely against abortion, Dianna decided not to terminate Mary Rose because of the diagnosis. “She was my child; whatever condition she was in, that was going to be good enough for me.”

As the pregnancy continued, Dianna consulted with her Eastern Orthodox priest and others to prepare for Mary Rose's birth and the range of outcomes for children with Trisomy 18 – and to prepare for Mary Rose's death. For their family that meant having her birth at home so that they would be able to prepare Mary Rose’s body for a funeral themselves, rather than have her be sent to the morgue, as would be required with a hospital death in their home state of Virginia.

Looking back, Dianna says that Mary Rose's life and death were “very peaceful.” The complications of Trisomy 18 caused breathing difficulties. “We didn’t even know which second it was that she stopped breathing,” Dianna said. “There was no suffering; we were the ones who were suffering.”

However, her most severe regret, Dianna told CNA, is that she didn't seek out perinatal hospice – which focuses on helping newborns and infants die comfortably and peacefully – rather than pediatric hospice, which provides end-of-life care for children. While she had the support of doctors, Dianna still feels that her experience with pediatric hospice was difficult, saying that the pediatric hospice nurse “thought I was trying to kill my child” by accepting Mary Rose's likely death and refusing options like surgery or morphine use.

The fact that we offer a plan – something for the babies even though they have a very short life – is reassuring for them and it opens a hope.

Dianna also wishes that families, and mothers in particular, facing difficult prenatal diagnoses could find more support from their communities. People should not be afraid of not knowing what to say or upsetting the mother by mentioning the baby, Vagianos said. “The mother is already upset and the mother is never going to forget that baby.”

Despite the difficulties she faced with pediatric hospice and in finding community support, Dianna maintains that she found healing through Mary Rose’s death and through the “blessing” it was to come to know her daughter. She is grateful, she says for support she found online and for the healing she’s experienced by detailing her experiences in journals, on her blog and through an upcoming book on their family’s experience.

“People need support at diagnosis,” said Tracy Winsor, Co-Founder of Be Not Afraid, a comprehensive peer ministry to parents facing difficult prenatal diagnoses.

Winsor told CNA that many times when parents face a challenging prenatal diagnosis, they do not know anyone who has been through a similar situation before or have the resources and support they need. When offered support and information on perinatal care and options for their child, parents are more likely to carry their child to term.

She explained that within Be Not Afraid, they provide a variety of services in order to support parents facing poor prenatal diagnosis and seeking to carry their child to term. In addition to perinatal hospice and peer support, Be Not Afraid also helps parents plan the birth process, making sure they have informed consent for any treatment options available as well as a plan for supporting the child for as long as he or she lives. If parents wish to seek extraordinary care or surgery to address congenital defects, Be Not Afraid helps them find out where procedures and kinds of care are available, if those options are not offered in the family’s hometown.

Be Not Afraid has also been able to help arrange other kinds of support as well for families. “We’ve been able to help get Catholic clergy scrubbed and into (operating rooms). Catholic clergy who were able to lead the surgical team in prayer. Catholic clergy that were in there baptizing if the parents want it.”

The range of care provided by Be Not Afraid, she said, is in a way, an extension of pastoral care and the corporal works of mercy. Winsor pointed back to one of their first mothers, where Winsor and others helped to arrange a birth plan and provide support at the hospital for a mother whose baby was stillborn.

When taking a break to get coffee, one of the nurses approached Winsor and told her “‘Oh my gosh, I had no idea you were a service I just thought that mother had the best friends.’”

Winsor also commented that a large part of providing support to families is in providing information. “Patients don’t always get information on what is basic care,” she said, adding that many families do not receive the full range of information on options for caring for their child and their condition.

As a result of the information and support that they provide, Winsor said she’s seen changes in the medical community where Be Not Afraid works.

“I think the medical providers are happy to know that our families have been well-supported and well-prepared,” she commented, adding that most of their referrals now come from within the medical community. Winsor added that she’s also seen personal changes in medical providers who may not have initially supported a family’s decision to carry their child to term.

“We've had physicians who’ve been less than supportive show up at a birth and weep, because they encounter the humanity of the baby through the parents – who are well-supported.”

The experience of bringing their child to term, particularly with information and support for the birth and death process, can change a parent’s perception of their diagnosis. “One of the things we find is that parents come through the diagnosis and often their first instinct and certainly the instinct of everyone around them is that the train wreck is going to be the birth,” Winsor said.

“What we say is that the train wreck is the diagnosis.” Winsor said this maxim has been borne out by parent feedback.“By and large, the parents will tell you that the worst day was diagnosis and the birth, even if it means a death, is better than diagnosis.”

Elvira Parravicini, MD, Assistant Professor of Pediatrics at Columbia University Medical Center, is director of the Neonatal Comfort Care Program at NY-Presbyterian/Columbia University where she helps provide care for newborns with “life-limiting conditions.” She described to CNA the medical support she and her program aim to provide patients with poor prenatal diagnoses and their families.

Dr. Parravicini said she started developing a set of resources for infants facing death when she came across mothers in her own practice who wanted to continue their pregnancies despite their child’s diagnosis.

“I’m their physician– I need to do something for them,” she said to herself at the time.

Care, she continued, focuses on both making the child comfortable, as well as offering support and care for the baby’s parents. Dr. Parravicini and other physicians at the Neonatal Comfort Care Program help to put together a unique nursing and medical plan for infants that can be used no matter how short or long a child’s life is. The first goal is to provide comfort for the babies, which includes bonding with the family, being warm, and if it is possible, being fed.

“The fact that we offer a plan – something for the babies even though they have a very short life – is reassuring for them and it opens a hope,” she said.

Hope, for families facing a difficult prenatal diagnosis, is an important part of the parental process. “The idea of having your child die in your arms is devastating – it’s almost unimaginable,” Dr. Parravicini said. “What our program does is not only be following this program we make babies’ lives comfortable, but also supporting the parents in their parenthood.”

Supporting patients in birth and in death places the focus on what is truly important: the baby’s life. “Before death there is life,” Dr. Parravicini mused. “All our care, our concern, is concentrated in those minutes, hours, days, weeks of life.”

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