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Be Not Afraid to hold free conference in October

August 1, 2011

If you plan to be in Charlotte October 20 and 21st, please consider attending our free conference. You will leave with a greater awareness of the frequency with which prenatal diagnosis touches the lives of those in your community, endowed with a sensitivity that we hope will grow into a desire to help families when they learn their unborn baby will be born with a genetic syndrome or various birth defects. Dr. John Bruchalski of Tepeyac Family Center and Dr. Marcella Colbert, founder of Gabriel Project are among our featured speakers.

You may read more about our conference in this week’s Arlington Examiner:

Our Sunday Visitor features a BNA mom

January 5, 2011

This article came out in early December. Unfortunately, the online version is stripped of the beautiful accompanying photo of Amy Horlander holding her newborn son, Andrew Benedict.

  Helping parents cope with poor prenatal diagnosis

More pastoral care needed, say organizations that provide outreach to parents of ill unborn children

By Michelle Martin – OSV Newsweekly, 12/5/2010

Amy Horlander was preparing to move her family from Indianapolis to Cary, N.C., last spring. At the same time, she was expecting her family’s 10th child. It was a busy time, to say the least, but it was a happy time, too. 

Then, shortly before the move, Horlander found out that her baby boy was very, very sick and, if he was born alive, would die shortly after birth. 

She went online looking for support for birth defects and found, which offers support to couples and families who have had poor prenatal diagnoses and encourages them to carry their infants to term, or at least as long as possible. 

Searching for guidance

With ever more sophisticated prenatal tests available, there are more and more people in Horlander’s situation. Many go in for a “routine” ultrasound looking forward to catching a glimpse of their babies and maybe finding out if the baby is a boy or a girl, and the room goes quiet as a technician or doctor notices that something doesn’t look right. 

Others are notified after screening tests that the babies they are carrying have an elevated chance of neural tube defects such as spina bifida or chromosomal abnormalities such as Down syndrome, and are asked if they want a test such as amniocentesis to find out for sure. 

Generally, when a poor diagnosis is confirmed, the parents are told they still have time to abort the baby, and it is often suggested that abortion would be the best course of action. 

Catholic parents may look to the Church for information and pastoral care as they carry their babies to term, but such care is not always forthcoming, said Monica Rafie, the founder of Be Not Afraid (, which offers online support and resources for people facing a poor prenatal diagnosis.  

“What we don’t have is widespread parish response,” said Rafie, who participated in an Oct. 5 webinar on poor prenatal diagnoses hosted by the National Catholic Partnership on Disability (NCPD). “If you travel across the country, there are good programs in every state, but they are not everywhere. … This is not a new problem. Prenatal testing has been around for a long time. We’re behind on this.”  continue

Charlotte Observer begins series about a young family carrying to term after diagnosis of anencephaly

November 14, 2010

The Brooks family is very special to BNA and BNA Charlotte. Skylar Brooks lived for 99 minutes, but her story transcends those who loved and met her. Please read the series – it will probably win an award, but in any case, it will surely win your heart.

99 Minutes – A Life, A Legacy
Like most couples expecting a baby, Shannon and Kip Brooks couldn’t wait to show off ultrasound pictures to family and friends. So in early March, when she was about four months pregnant, they arranged to get a keepsake ultrasound on DVD. It was the start of a punishing, yet enriching journey that changed their lives and, maybe, created hope for other families.

National Hydrocephalus Awareness Month, 2010, changing the “culture of despair”

September 1, 2010

Has it really been a year since parents Kim and Michael Illions initiated a national awareness campaign for pediatric hydrocephalus? Through the Pediatric Hydrocephalus Foundation, which they founded and direct, support chapters have been developed in New Jersey and Pennsylvania, and as more and more parents come aboard, so too will more and more support opportunities for families dealing with congenital or pediatric hydrocephalus.  Kudos to Kim and Michael who are really making a difference not only for their own son, Cole, but for all the babies born with this serious condition.

Visit the PHF blog here. Pictured is a New Jersey flagraising event to commence National Hydrocephalus Awareness Month! Contact the Illions for ideas of how to commorate the cause in your area.

World mag features several BNA moms

June 11, 2010

Thanks to Cody Holt and World Mag for this piece which looks at five moms who resisted termination after prenatal diagnosis. This choice is growing more and more common as parents find support (such as perinatal hospice), and as medical progress continues to improve outcomes. But apart from all those considerations, many parents continue their pregnancies simply because they believe it is the right thing to do.

Life over death

Abortion | Five women give birth despite U.S. medical pressure to abort | Cody Holt

Kim Illion says it took her four months to grasp that Cole, her unborn son, had been diagnosed with hydrocephalus—water on the brain—at 20 weeks. “I cried every single day,” said the mother from Iselin, N.J. “I didn’t want to have a baby shower. I didn’t want to decorate the room, because I thought that I was bringing home a baby—if I was even bringing home a baby—who was going to die.”

Every day, parents like Illions and her husband hear dire news couched in clinical terms like “incompatible with life,” “no quality of life,” and “termination of pregnancy.” Many mothers abort but some don’t, not knowing whether their children will lead fairly normal lives, live with serious illnesses, or die soon after birth. Despite the uncertainty and fear, these mothers often have no regrets that they chose life for their children, no matter how brief. Here are the stories of five who continued their pregnancies despite medical advice to the contrary. continue at World Mag

See also: Washington Times: Choosing Not to Abort Babies with Disabilities

Mark your calendar, prenatal diagnosis webinar in October

June 10, 2010

If  you are already in (or plan to be in) the DC area in early October, you are welcome to attend this event, which will focus on issues surrounding prenatal diagnosis and how we can effectively serve the needs of the couples going through this type of experience. In addition, we will discuss how prenatal diagnosis should be of more concern to disability communities, and the Church at large.  If you are unable to attend the recording of the event live, the webinar will be available on the National Catholic Partnerhsip on Disability website.  I will be there and would love to meet anyone who reads the blog, parents who have special needs or medically fragile children, or just anyone who cares about how these issues play out in our culture, in our Church, and in our policy. Hope to see you there!

Andrea Bocelli’s encouraging words for mothers in “complicated situations”

June 2, 2010

This lovely video of a  few moments from a recent Bocelli concert is making the rounds, so I thought we should post it here too. The medical details are very sparse – it’s not clear how the treatments he describes would lead to such a draconion suggestion from the doctors, but it doesn’t matter. It was the story he was told, and whatever the actual details, it’s clear that his mother resisted having an abortion . . . and aren’t we all so blessed that she did!