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Category Archives: Perinatal Hospice



Tracy Winsor holding Haley Grace the first BeNotAfraid baby.

Perinatal Hospice Part 3
by Tracy Winsor,
Co-Founder, BeNotAfraid

[Editor’s note: In case you missed them, click to find Perinatal Hospice Part 1 and Part 2.]

North Carolina parents, Javier and Carolina Castro, were offered two options by their medical provider when they were told at twenty weeks gestation that their son had a lethal kidney anomaly.  Abort within the next week in North Carolina or travel to Georgia and abort sometime in the next month.

It was a friend who suggested a third option…carrying the baby to term.  She connected the couple to a local organization, Be Not Afraid (BNA), which offered perinatal hospice support to parents carrying to term following a prenatal diagnosis.  A BNA volunteer called Carolina Castro within hours.

“At first, she asked me just to listen to what she had to say,” explains Castro. “I had no hope that she had information that would be helpful for me. I had only heard of pregnancies with complications being terminated.”

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Javier and Carolina Castro welcome their son, Gabriel.                         (Photo © BeNotAfraid)

The volunteer acknowledged Carolina’s feelings of shock and grief. She told Carolina that the “diagnosis day” was the worst. Often parents at diagnosis fear that the worst is yet to come when really the worst has already happened.

She said that the birth, even if it meant a death, would be easier than the diagnosis because there would be time to prepare.

She provided information regarding BNA support, and encouraged Carolina to look at the FAQ page at ww.perinatalhospice.net so that she could be fully aware of the research that supported continuing the pregnancy as well as the risks of a second trimester abortion.

She shared stories about parents she had supported who had no regrets about continuing their pregnancies. It gave them time to cherish their child’s life. She also reminded Carolina that her son had not been changed by the diagnosis; he was still the baby she had loved from the moment she knew he existed.

She shared parents videos available at the BNA website so that Carolina would feel less isolated in the experience of this diagnosis, and so that she and Javier could begin to envision the possibilities of choosing not to abort.

“This made all the difference to us,” shares Castro. “We didn’t feel alone.”

“And I remember,” Castro adds, “That when she talked about our son, Gabriel, she referred to him as our precious baby.  This was so calming in the midst of the turmoil inside my head.  She recognized him as someone who mattered.”

While the primary focus of BNA is in serving parents who have committed to carrying to term, the organization is always prepared to provide information and prolife encouragement to parents who are undecided or even abortion-minded.

BNA Co-founder, Sandy Buck, explains, “We are fully committed to the dignity of all life no matter how frail or how brief, and that commitment is not only reflected in the care we provide to the parents who decide to carry to term and the babies welcomed by our service, but also in our willingness to engage parents who are undecided.”

Carolina Castro was one such parent who ultimately decided to continue her pregnancy. The BNA volunteers who supported her and Javier in welcoming their son considered it a privilege.

On September 17, 2013, Gabriel Andres Castro was born still.

In a blog post two days later, Carolina wrote…

One thought I do have very clear in my mind and in my heart, is that yes, it was all worth it…The diagnosis (day) was the worst day.  The day when they tell you what you hoped, what you thought you had, was no more.  “Your baby is incompatible with life…”  That was the…day of darkness, of hopelessness, of fear…  

September 17th, four months later, was very different.  It was a day of celebration, of union, of unconditional love.  

Castro reflects, “I have no regrets whatsoever. I am so glad the option of carrying to term was explained to me, and so glad I listened.”

Javi and Carolina are featured in a BNA parent DVD available at the LINK HERE.  Their interview is featured in the subsection entitled, “At diagnosis, parents need information regarding the option of carrying to term.”

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Tracy L. Winsor, MPA, is Cofounder of Be Not Afraid (BNA), a private non-profit corporation whose mission is to provide comprehensive, practical, and peer-based support to parents experiencing a prenatal diagnosis and carrying to term. She can be reached directly at Tracy.Winsor@benotafraid.net.

[Editor’s note: In case you missed them, click to find Perinatal Hospice Part 1 and Part 2.]

 

NRL News Today

As referenced by GLA’s Kristina Twitty in her Video Blog from the NRLC Convention. 

By Dave Andrusko

WinkfieldSchindlerCrosier5re

Convention goers to NRLC 2016 heard three first-hand stories of “Deadly Consequences of Medical Discrimination” at an opening day general session. All were true accounts that would break your heart.

In 2010 Sheryl and Scott Crosier’s son Simon was born with Trisomy 18, a severe genetic anomaly. But rather than seeing their son’s birth as a “curse” (as described in the documenary, “Labeled”). they saw him as a “blessing,” as Scott told the audience.

After their son’s condition was diagnosed, the family could see in retrospect, the hospital staff tried to manage and manipulate them into seeinge Simon as a syndrome rather than a baby. The Crosiers rejected that dehumanizing approach and worked against a staff that continued to tell them there was nothing they could do for Simon. They went so far as to ask, when the parents sought care for their youngest son, “are you doing this to Simon or for Simon?” as if they were harming him, Mrs. Crosier said.

She told the audience that she could still hear Scott telling the staff, “We are not here to expedite his demise.”

But 88 and one-half days after Simon was born, he died. Only afterwards did they learn that the hospital, without asking them for permission or telling them, had placed a “DNR”-Do Not Resuscitate”—on Simon’s chart.

The care was so minimal, Sheryl said, that had their son not stopped breathing, he would have starved to death.

The Crosiers are the driving force behind “Simon’s Law”—introduced in Kansas and Missouri—so that no DNR order can be placed on a minor without parental consent and requires that hospitals and medical facilities must disclose any “futility” polices if asked.

Scott said that a reporter asked all 165 hospitals in one state if they had futility polices in place and only five said no.

NRL News Today readers are very familiar with Jahi McMath, the teenager who went into a California hospital to remove her tonsils only to be declared brain dead less than three days later. Her mother, Nailah Winkfield, vigorously disagreed with the hospital’s attempt to remove her daughter from a ventilator, adamant that she was not brain-dead.

After an intense legal battle, she was allowed to move Jahi to a hospital in New Jersey. Her mother filled in the details, which made the story even more heartrending.

For example, Jahi had a premonition she would not wake up from the surgery. That it was not until Nailah’s mother, a nurse of 30 years standing, returned to the hospital that they were told how serious Jahi’s condition was. Mrs. Winkfield outlined how they had stalled for time and called in the media to save Jahi and how her lawyer agreed to take on the case without being paid.

At various times, Nailah was told Jahi would be dead within a couple of days. Two and a half years after the surgery, Jahi is still alive and still responding. Her mother is caring for her full-time. And why? “My kid is not dead.”

Terri Schiavo’s brother, Bobby Schindler, provided a much appreciated update on the Terri Schiavo Life & Hope Foundation, which he started to honor his sister and to help other cognitively impaired individuals in perilous situations, and how he was privileged to help Mrs. Winkfield.

For More NRL News CLICK HERE.

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Perinatal Hospice  – Part 2
by Tracy Winsor

(Part 1 can be found here.)

Sometimes the happy occasion of a prenatal ultrasound suddenly isn’t.

South Carolina expectant parents, Keith and Katherine Brown, learned that their first pregnancy was complicated by a prenatal diagnosis when abnormalities were detected during an anatomy scan at nineteen weeks gestation.

There were a number of issues, but most notably there was excess fluid in their daughter’s skull and abdomen and all four of her limbs were atypical. Additional testing was inconclusive, but the doctors suspected that Baby Grace had a rare genetic condition.  The prognosis was grim.

“We were presented with many new medical terms and I just kept thinking that this was not supposed to be happening,” shares Katherine Brown.  “Learning our first child had defects that would not likely allow her to live outside the womb was heart breaking.”

The Browns were fortunate that a perinatal hospice service which provided support to parents carrying to term following a life-limiting prenatal diagnosis existed in their community.  A genetics counselor at their maternal fetal medicine practice referred them to Perinatal ComfortCare, which provided on-going contacts and practical guidance for the Browns over the next eight weeks.  Perinatal hospice is a life-affirming care option for parents committed to carrying a baby with a prenatal diagnosis to term.

Tammy Tate, CEO/Founder of Perinatal ComfortCare, met with them to share information regarding how they could cherish the time they had with their daughter, and memory-making options they could request at birth. When Grace was born still at twenty-seven weeks gestation, Tate was there at the hospital providing comfort and consolation, and assisting in coordinating their care.

“The practical guidance she gave us in terms of preparing us for what we would experience in the hospital was invaluable,” notes Brown.

“I had no idea I could tell the hospital staff what I wanted during delivery or that I could hold my baby and spend time with her,” she adds.  “We would’ve never thought of taking pictures of us holding Grace, and I am not sure we would have had a funeral without Tammy’s guidance.”

First introduced in medical literature in 1997, perinatal hospice care provides comprehensive support to expectant parents told that their baby will die at or shortly after birth.  Utilizing a multidisciplinary team including genetic counselors, obstetric and neonatal physicians, nurses, clergy, social workers, etc., perinatal hospice services support parents during pregnancy, and for at least one year after delivery.

Parents’ needs are addressed by providing appropriate medical consults, assistance preparing birth plans, guidance regarding options for newborn care, and bereavement support.  This specialized service for parents prior to delivery allows them to prepare fully for birth, and to parent their baby for the time they will have no matter how brief or how frail that child’s life may be.  The parent response to perinatal hospice is positive.

Nancy Mayer-Whittington, co-founder of Isaiah’s Promise, a perinatal hospice service in Maryland, is herself a mother who carried to term following a prenatal diagnosis.

Mayer-Whittington observes, “I would have felt less isolated and less alienated had I received the care we at Isaiah’s Promise provide to parents. Having the support of someone who can suggest options and understands the experience can make all the difference in the world.”

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Tracy L. Winsor, MPA, is Cofounder of Be Not Afraid (BNA), a private non-profit corporation whose mission is to provide comprehensive, practical, and peer-based support to parents experiencing a prenatal diagnosis and carrying to term. She can be reached directly at Tracy.Winsor@benotafraid.net.

References:
Link 1 http://www.perinatalhospice.org/home.html
Link 2 http://perinatalcomfortcare.org/
Link3 http://www.ncbi.nlm.nih.gov/pubmed/?term=Perinatal+hospice%3A+should+all+centers+have+this+service%3F
Link 4 http://www.isaiahspromise.net/