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Groups Provide Support for Parents After Prenatal Diagnosis (UPDATE 4 Feb 2012)

Be Not Afraid — www.benotafraid.net
Living With Trisomy 13 – www.livingwitht13.org
Prenatal Partners for Life — www.prenatalpartnersforlife.org
1heart2souls — www.1heart2souls.org



Be Not Afraid: Hope for Parents Whose Babies Will Likely Die

What do you do after finding out that your unborn baby has a defect that is ‘incompatible with life’? Many parents are presented with a dreadful choice: either get an abortion, or carry to term a diseased fetus, who will face untold medical complications and who will likely die anyway.

With the dilemma put like this, as many as 80-90% of parents with an unborn baby with a serious medical condition opt for abortion. However, a growing number are uncomfortable with this option. The question is, where do such parents turn for support to help bring their baby into the world?

Enter the Be Not Afraid Ministry (BNAM), a specialized pro-life ministry that stands side-by-side with such parents, providing a network of support to help them choose life…however short that life may be.
Be Not Afraid provides what Monica Rafie describes as a "ministry of presence" to parents who have received a poor prenatal diagnosis.

Monica Rafie, the co-foundress of Be Not Afraid, says that those in her ministry believe that there is essentially no difference between an unborn baby who has a poor diagnosis or a healthy one, since both share “the same dignity before God.”

She says she tells parents who have just received bad news about their child “to slow down and take a deep breath.” The most difficult part of the journey is simply receiving the diagnosis, she says. “As absurd as it may seem, the worst is already behind you.”

“Your baby hasn’t changed, you just have more information – it is the same baby you loved yesterday,” she tells parents. “The challenge now is to parent him or her to the best of your ability recognizing (if your baby’s diagnosis is fatal) that this precious time of pregnancy may be the only time you have with your baby.”

‘Precious moments’ with an angel

No one knows this challenge better than James and Elizabeth (names changed). After an ultrasound they were devastated to hear their doctor say that there were “bone fragments missing from the baby’s head.”

A specialist confirmed that the baby had anencephaly, a non-viable condition, presenting what Elizabeth remembers as an “ugly scientific picture” of what their baby would look like when born. With the baby having no chance of survival, the doctor gave the parents the option to abort, or to attempt to carry the baby to term.

While James and Elizabeth knew that their baby was not going to live after birth and that there was no cure for anencephaly, they decided to carry the baby with hearts “full of faith in the plan God had in store for us.” After deciding to treat their baby as a normal pregnancy, the parents remember feeling “so much better.” Another ultrasound revealed that they were going to have a boy.

While they were saddened that their son had anencephaly, they remember being simply happy that he was alive.

At the birth, “my husband cut the umbilical cord and the nurse wiped him off and put a warm little cap on him before I held him. I did not cry, I just held him, kissed and hugged him, and told him how much we loved our little angel,” said Elizabeth in her story, carried on BNAM’s website.

John Raphael lived 7 minutes. He weighed 7 lbs, 8 oz. and was 21 inches long.

A few years have now gone by. But James and Elizabeth say that they “don’t ever regret” their decision to carry their son to term. “It may sound strange but we actually feel ‘blessed’ to have brought our son to this world only to give him back to the Lord.”

To birth and beyond

The many testimonials collected by the Be Not Afraid team share this common theme: that opting for life allows the parents to respect and honor the life of their child, to continue to love and to hold him or her for as long as possible, and to say a natural and genuine ‘farewell.’

Be Not Afraid Ministry exists to help foster this kind of loving and accepting relationship between parents and their sickly baby by providing parents with a network of support.

“We cannot ‘fix’ the medical problems that are present with many prenatal diagnoses,” Rafie says she tells parents. “We wish we could, but we can make certain that you are not alone, that you are well supported in the experience of carrying your baby to term after a prenatal diagnosis.”

The Be Not Afraid team runs a website filled with resources, provides local service and support, and spreads education and awareness through media and at conferences.

But Monica believes that supportive relationships and person-to-person care are the “most important components” of the Be Not Afraid outreach. These are offered with the help of Tracy Winsor and Sandy Buck from Charlotte, North Carolina, and in collaboration with clergy, medical providers, and other community resources.

“What parents need most are on-going relationships with people in their own community who can provide practical guidance surrounding the specific issues they are facing with sensitive, compassionate care,” says Rafie.

Be Not Afraid Ministry is what Monica calls a “ministry of presence.”

Among other things, Be Not Afraid provides parents with phone communication support, meets with them in their home to draft birth plans around a kitchen table, travels with them to doctor visits, helps a family member or relative process their real and imagined fears, organizes meals for overwhelmed families, attends births, organizes prayer showers, advocates on the parents’ behalf for fully informed decision-making, and advocates for basic humane care for babies not expected to survive after birth.

While Be Not Afraid Ministry cannot be everywhere at once to minister to parents who have received a dire prenatal diagnosis, they have successfully partnered and collaborated with already existing support organizations such as Isaiah’s Promise to be present to parents who need support.

“Honestly, I don’t know what I would have done without BNAM support,” said one woman who was pregnant with mono-amniotic twins who were connected to a single placenta and developing in the same amniotic sac. The mother was crushed when one of the twins succumbed after prenatal surgery.

“BNAM connected me to other moms who had lost a twin, even another mom whose pregnancy continued like mine beyond the loss of the first baby,” said the mother. “There were weekly visits and encouraging phone calls, assistance in preparing for the birth. … There were pints of ice cream and special remembrances of Layla, hugs and tears, and often laughter from my hospital room that compelled nurses on staff to see what was going on.”

Be Not Afraid Ministry has learned in their few years of existence that affirming the dignity of the unborn child and encouraging the parents to welcome the life entrusted to them is an approach that resonates with the desires of most parents.

“There is no diagnosis that will change our perspective of the value and dignity of any particular baby,” said Monica.

“We must always respond with the sense that no diagnosis is as important as the
child’s dignity.”

Contact Be Not Afraid Ministry
Website: benotafraid.net
E-mail: [email protected]

Read inspirational stories from parents.

BNAM local services are currently available in Charlotte, NC, in the dioceses of Charleston, SC, and Richmond, VA. Services are being developed in Austin, TX, Providence, RI, and St. Petersburg, FL.
[1 Feb 2012, Peter Baklinski, CHARLOTTE, North Carolina,   http://www.lifesitenews.com/news/be-not-afraid-providing-hope-to-parents-whose-babies-will-likely-die-soon-a?utm_source=LifeSiteNews.com+Daily+Newsletter&utm_campaign=17dc596e69-LifeSiteNews_com_US_Headlines_01_31_2012&utm_medium=email]

Groups Provide Support for Parents After Prenatal Diagnosis
I have always believed that most expecting women do not go into prenatal testing with the intent to abort their child if something is found to be wrong. I have read countless stories of women who are pressured by health care professionals to use abortion to “solve” fetal medical problems.

I know in my deepest soul that eugenic abortion is so prevalent not because women want to abort their not-so-perfect fetus but because they are told, in their time of crisis and at their most vulnerable by the health care professionals that they trust, that there is no other choice.

ThereseAnn, Site facilitator for the website Living with Trisomy 13, and mother to a Trisomy 13 daughter, wrote the following about the experiences of women who were told they were carrying a child with Trisomy 13:

    Over the years I’ve received many emails from women who aborted, terminated or induced early their Trisomy 13 children. They were amazed and completely surprised that their child could have survived, or at least grown to a point where they could reach their mothers arms! These women were given NO HOPE that their child would make it to term. Many were even told that their child’s diagnosis was more severe than the norm and discouraged from researching the disorder for themselves. Without a full understanding of this complex disorder, they felt they had no option but to terminate with all the pressures around them. These women fall into a unique category, those who felt “pressured to interrupt their pregnancy for medical reasons.”


Another mother, Katie, wrote this about her treatment by medical professionals after a prenatal diagnosis of Trisomy 13:

    We had chosen to have a termination due to all the pressure from the doctors/genetic counselors/professionals. Also at that time it was all we knew to do. No one gave us any information and we had no access to viable information….

    Maybe if the professionals we had talked to would have given us more information we would have made a different choice. To this day, I still live with the pain of the choices we made. Trisomy needs to have a bigger voice and all the professionals need to be more open minded and not so much on terminating, after all do they really know the after pains we go through?

Dr. Richard W. Sams II, a family physician in the United States Navy and the director of the Naval Hospital Jacksonville Family Medicine Residency Program, relayed the experience of one of his patients in an article for The New Atlantis journal:

    One woman for whom I provided prenatal care had a child diagnosed with a severe heart anomaly by ultrasound at 20 weeks gestation. The anomaly is virtually always lethal. Both a perinatologist and a geneticist recommended to the couple that the woman have an abortion. Despite being deeply offended by the recommendation and informing the physicians that she would carry the child to term, the suggestion was repeated numerous times. Her experience is far from anomalous.

These experiences are as ubiquitous as they are horrifying.  And that is why the announcement of a new organization to help parents who have been given an devastating prenatal diagnosis is so heartening.  Started by Theresa Gray, grandmother of conjoined twins who died shortly after birth, 1heart2souls seeks to provide resources and options to expectant parents besides just killing their child.  From Lifesitenews:

    1heart2souls is an organization formed to support expectant parents who will experience infant loss or the birth of an infant with disabilities. Gray says that over 98% of babies with a poor prenatal prognosis are aborted.

    1heart2souls seeks to get information to genetic counselors, ob/gyns, and clinics where parents will likely get the negative prognosis. This is important, says Gray, because these expectant parents are normally given abortion option literature.

    “This is disturbing and has to be challenged,” she told LifeSiteNews.

    Gray’s nonprofit is comprised primarily of women who have lost their infants or have a child with disabilities.  It is currently 100% volunteer.

    The organization’s vision and hope is that in supporting and bringing awareness to the suffering and challenges of expectant parents it will lead to further research on causes and prevention of infant loss and birth disabilities. More importantly, they hope that through compassionate support parents will realize the joy in embracing their child or children.

    “We believe that all children are created in the image of love, and are fits to the world with a given and profound purpose,” Gray said.

Another great resource that has been around for many years is Be Not Afraid.  At their website you can find all kinds of resources for just about any prenatal diagnosis.  And it is also a great place for genetic counselors as well who want to provide more than just abortion referrals.  Karen, a genetic counselor, wrote the following about Be Not Afraid:

    “Genetic counselors are frequently the providers that break the initial news to parents about their baby.  It’s not easy for parents to hear this “news” –  it is a life-altering and critical time and they feel all the weight of the world upon their shoulders.  I always consider the time I spend with them a true privilege. Every story is different, but each one deeply moves me, especially when I am allowed to enter into their lives.  In them I see that that unconditional love only a mother and a father can have for their baby despite knowing their baby has serious birth defects, some of them life threatening. We cannot do this alone. Be Not Afraid Ministry has been an instrumental resource because they bring a higher level of care and support to these families. I feel truly indebted to them.”

These two organizations remind us all that there is no hope in abortion, only death.  Parents do have other options and places to turn if they are being pressured to abort their child because of a prenatal diagnosis:

Be Not Afraid — www.benotafraid.net
Living With Trisomy 13 – www.livingwitht13.org
Prenatal Partners for Life — www.prenatalpartnersforlife.org
1heart2souls — www.1heart2souls.org

LifeNews.com Note: Rebecca Taylor is a clinical laboratory specialist in molecular biology, and  writes at the bioethics blog Mary Meets Dolly. She has been writing and speaking about  biotechnology for five years and has been interviewed on radio on topics from stem cell research and cloning to

voting pro-life. Taylor has a B.S. in Biochemistry from University of San Francisco with a national certification in clinical Molecular Biology MB (ASCP).
[22 Sept 2011, http://www.lifenews.com/2011/09/22/groups-provide-support-for-parents-after-prenatal-diagnosis/]