Be Not Afraid: hope for parents whose babies will likely die
CHARLOTTE, North Carolina, February 1, 2012 (LifeSiteNews.com) – 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.
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.”
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.