BeNotAfraid.net Blog

Be Not Afraid to hold free conference in October

benotafraid — Mon, 01 Aug 2011 05:13:32 +0000

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:

Local prolife OB/GYN, Dr. John Bruchalski, to speak at Be Not Afraid Conference

Our Sunday Visitor features a BNA mom

benotafraid — Wed, 05 Jan 2011 19:54:56 +0000

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 BeNotAfraid.net, 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 (www.benotafraid.net), 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

benotafraid — Sun, 14 Nov 2010 21:06:08 +0000

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”

benotafraid — Wed, 01 Sep 2010 22:08:16 +0000

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

benotafraid — Fri, 11 Jun 2010 02:07:01 +0000

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

Mark your calendar, prenatal diagnosis webinar in October

benotafraid — Thu, 10 Jun 2010 20:06:59 +0000

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”

benotafraid — Wed, 02 Jun 2010 22:41:18 +0000

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!

http://youtu.be/6QfKCGTfn3o

Baby Bennett continues to thrive

benotafraid — Mon, 17 May 2010 13:57:48 +0000

Many of us were drawn into the story of the diagnosis and birth of baby Bennett. You may recall, he was not expected to survive. But his parents have given him every opportunity to thrive (which began with the decision to carry him to term). Just look at him now!

Kelly says that he has developed brain tissue. I wonder if parents are told that this is possible? Thankfully, there is a great organization, The Pediatric Hydrocephalus Foundation, which will make sure that parents are given the latest information and the full range of possibilities when a child is prenatally (or postnatally) diagnosed with hydrocephalus.

ABC News took Bennett’s story “national”. Read it, and then please share the story with as many people as you can.

Pittsburgh Mom Determined to Help Son

Kelly Frey, an anchor for ABC News affiliate WTAE-TV in Pittsburgh, was 13 weeks pregnant with her son, Bennett, when she got the news that no prospective parent wants to hear.

“What we saw on that screen, the head area had just black,” Frey said of the ultrasound.

A routine ultrasound in 2009 revealed a chilling vision: Where there should have been brain tissue, there was nothing, just black. The fetus was suffering from severe hydrocephalus, which is a buildup of fluid on the brain. Most people are born with the ailment or suffer from it after a severe head injury.

The trauma didn’t stop there. Bennett was also suffering from Dandy Walker Syndrome, a congenital brain malformation of the cerebellum. The cerebellum controls movement.

The doctors told Frey and her husband, Jason, that their son had little chance of surviving past birth.

“It was the deepest grief we have ever known; they’re telling us he is going to die,” Frey said of the diagnoses.

The couple decided to continue with their pregnancy. They say that Bennett’s birth is a miracle. continue

Rejecting advice to abort, Mom says, “My whole life became happy again.”

benotafraid — Tue, 11 May 2010 13:21:16 +0000

Sixth-grader Christopher Cobun, born with ectopia cordis, tells the world that he is “just a normal boy”, and apart from having spent almost a year in the hospital upon birth, over a year with a ventilator, and countless therapies, that may well be close to true. But no one can deny that his mother, Stacey, is extraordinary.

His success is a testament to his tenacious mother, Stacey Wehmann, who decided almost from the moment she learned about her baby’s fragile condition that she would do things her way. No, she would not terminate the pregnancy. No, Christopher would not be tethered to a ventilator for the rest of his life. And yes, she would put him on roller skates when he was barely out of diapers. “She worries like any mom,” says Christopher. “But she doesn’t stop me from being me and having fun.” continue

Read about yet another survivor of ectopia cordis, now in his 30′s, and his ever-devoted mom: “Don’t be afraid”: Incredible young man survives ectopia cordis

Beauty in the solidarity of shared experiences

benotafraid — Tue, 04 May 2010 16:24:27 +0000

We are really at a different place – in the world of helping families with a prenatal diagnosis – than we were 10 years ago. The services that have sprung up in response to the very specific needs of parents, such as perinatal hospice, bereavement and celebration of life photography, even songwriters are thriving. It will always be scary and heartbreakingly awful to find out that your baby has life-threatening defects. But thanks to the internet, and the solidarity of shared experience, more parents will know that the moments leading up to loss can be filled with raw sweetness and a beauty that only comes from choosing to welcome life into the world, even a very brief one.

And so, the Davis family, who graciously share their too-few moments with baby Jacob in this video, accept the time they have and fill it with tenderness and tears. Jacob had been diagnosed with Pallister-Killian syndrome, which is not typically life-threatening (see Simon’s story). But Jacob was also diagnosed with a congenital diaphragmatic hernia, complicating his prognosis. He was not expected to be with them for long.