After stillbirth, households search for dignity
When Emma Ping was pregnant with her fifth child, Selah, at the 35th week of pregnancy, she thought she was clear. Having miscarried months earlier in the sixth week of pregnancy, she was nervous when she got pregnant again. But deep into their third trimester, their chances of a healthy birth were mostly positive.
Then, at 36 weeks, Selah died in the womb when her umbilical cord wrapped around her neck twice. Ping joined the countless mothers who have been swollen with milk throughout history and longed for an alternative reality after the birth of a stillborn child.
However, there was at least some comfort in her nightmare. Ping and her husband didn't immediately have to rush into heartbreaking decisions like choosing a gravestone, a song for the funeral, or a tiny funeral outfit among the gifts for the baby shower.
Instead, the pings were offered a so-called CuddleCot, a miniature cooling unit disguised as a bassinet. Instead of flinging Selah's body for physical preservation, the hospital allowed them to hold their baby in bed for up to 48 hours and offered their siblings, friends, and family the opportunity to hold and meet them.
In recent years and in many hospitals, the baby would have been banished to a distant morgue. Selah's presence was an ointment for Ping that described one night when she woke up traumatized in her hospital room at 2:30 in the morning and "could not make me turn around and turn away from her."
She believes it is a great consolation to “have the experience that people have when their babies are born alive so that the baby is with you all the time and you take care of them, put them on, take photos and share this time can spend them. ”
It wasn't long ago that stillbirth – the loss of a fetus after 20 weeks – was generally seen as something that should be forgotten as soon as possible. In the 1960s and 1970s, women typically did not see babies who died before or shortly after birth. The babies were quickly carried away, leaving an empty womb and an uncanny silence. There were often no death certificates, funerals, tombstones or photos. It was as if the child had never existed and hospitals tried to quietly resolve the incidents.
But many today are far less averse to grieving death in the delivery room. Hospitals are increasingly offering parents the opportunity to grieve a child who has been lost after 20 weeks. This is being driven by a coalition of volunteers, nonprofits and boutique companies promoting the idea of the "perinatal hospice".
"The loss of a premature baby is devastating, and the ambiguity of our culture regarding the personality of the unborn adds to the difficulty and complexity of this particular type of grief," said Tish Harrison Warren, a writer and Anglican priest who spoke about the search after the child's dignity after her miscarriage.
Mourning for stillborn children could actually be the area where Americans' shared views about personality in the womb find common ground.
Hospitals are increasingly offering parents the opportunity to grieve a child who has been lost after 20 weeks.
Overall, the Americans have been in the decades since Roe v. Wade remained divided over the morality of abortion. However, surveys have shown that a majority of Americans feel uncomfortable after 20 weeks of abortion and that an overwhelming majority refuse to do so in the third trimester. These feelings have shaped a movement to honor the lives of infants who were almost there. The movement has sometimes been an overlooked battle line in the struggle to define when life begins. In the early 2000s, pro-choice groups campaigned against the Missing Angels legislation passed in more than 20 states and gave birth certificates to stillborn children. And there are still legal disputes over whether a stillborn fetus should be considered a full-fledged child in cases of treatment errors.
"From a societal perspective, many people don't see embryos and fetuses as completely human in the first trimester," said Christina Francis, a board-certified gynecologist and chairperson of the American Association of Pro -Life Obstetricians and Gynecologists (AAPLOG). Many women "feel their miscarriages very deeply in the first trimester, but from a practical point of view, the longer they carry the baby, the more they will feel connected."
An estimated 24,000 women are stillborn each year in the United States, and at least 10 to 15 percent of all pregnancies end in miscarriage (20 weeks ago). According to some estimates, up to a quarter of pregnancies lead to miscarriages.
"Miscarriages are a common and normal part of human experience, but we rarely talk about them. A woman who goes through one often feels that she or her and her partner are alone," wrote Amy Webb, a New York professor University in The Atlantic. Webb suffered eight miscarriages while continuing to work. The colleagues were not aware of their losses.
T.The undervaluation of young life has a long history. Ancient Roman culture, known for its widespread child murder, did not offer grief to children who died in the first year. Children who died before the age of ten had less mourning time than adults. In ancient Egypt and in many other cultures, child death was so common that parents often didn't name children for months. This practice has proven itself to this day. An academic study found that between 1800 and 1979, one in five children who died in the United States before the age of 1 was unnamed.
For example, the Jewish tradition has responded to the high child mortality rate in recent centuries by relieving parents and the community of their mourning duties. In many cases, grieving families did not know the location of the grave during the child's funeral and did not hold a funeral, nor did they watch the week of the visit. In the past 30 years, some Jewish traditions have developed more detailed rituals for observing mourning and burial, especially as the stillbirth and newborn mortality rates have decreased. (According to The Jerusalem Post, the Israeli Ministry of Health only issued more formal regulations for burial of infants in 2017.)
Image: Sandy Puc / Courtesy of Now I'm going to bed
As late as the late 1980s, mothers with babies who died during pregnancy were prompted to quickly forget their experiences. Lindsey Wimmer, executive director of the Star Legacy Foundation, which works for families who have suffered a perinatal death, said that parents sometimes did not name their children or did not see them at all – and were often told that they should "move on and another baby to get".
But stillbirth rates fell dramatically in the second half of the past century. In 1931, 3.8 out of 100 births were stillbirths, according to the CDC. By 2019, stillbirths in the U.S. had dropped to 1 in 100 births. How much of this decline is due to legalized abortion is under discussion, as abandoned pregnancies are not included in the prenatal mortality statistics. However, it is clear that transformative advances in medicine such as prenatal testing, early ultrasound, and advanced neonatal care have led to healthier babies. Falling stillbirth rates make the relative rarity of losing a child after 20 weeks more culturally acceptable and logistically more practical to mourn the tragedy that it is.
"There was a paradigm shift in the mid to late 1980s," said Wimmer. In 1988, President Ronald Reagan recognized this shift by declaring October the month of education about pregnancy and child loss. "There was a general movement to encourage families to meet their babies, take photos, or hold a memorial service."
T.Although there has been a cultural change for years, the past decade has brought about particularly dramatic changes. Of the more than 2,000 U.S. hospitals that offer obstetric care, more than 300 have perinatal hospice programs and technologies that enable families to spend more time with their deceased infants. The perinatal hospice often includes palliative and grief counseling for fatal pregnancy diagnoses. Although some doctors advise women to quit, many women choose to care for and comfort their children as long as they survive after birth.
Francis of AAPLOG said that most doctors are unfamiliar with the perinatal hospice or do not offer it as a viable option when pregnancy fails. She said mothers would have told her they would have chosen this way of abortion if it had been presented to them.
One way some families can deal with their loss is through portraits of their stillborn children. Now I'm going to sleep, perhaps the best known group that focuses on stillbirth photography, started in 2005 when Mike and Cheryl Haggard lost their newborn baby Maddux to a disease called myotubular myopathy. After Cheryl's disappointment with her personal photos, the couple called a professional photographer to record their time with Maddux. “When I see the pictures of Maddux, I am not reminded of the pain and sadness that night. I am reminded of the beauty and blessings that Maddux continues to have in our lives, ”Cheryl said in a video posted on her website. The Haggards organization has brought more than 40,000 families together with volunteer photographers.
Mourning for stillborn children could actually be the area where Americans' shared views about personality in the womb find common ground.
The idea for CuddleCots, like Ping's, came from a grieving mother. Steve Huggins, founder of CuddleCot, ran a company in the UK that developed a cooling system for late obese patients. He was surprised when a mother requested a special unit for her baby. Huggins designed a custom unit and new orders were placed as the news spread on social media. Since launching the CuddleCot in 2010, Huggins has sold more than 1,100 units in the U.S., primarily for hospital use but also for some parents who take deceased infants home for several days. At around $ 3,000, most CuddleCots are bought by families and donated to hospitals who found comfort in using one themselves.
"We had no idea that there would be so much demand for it," said Huggins in an interview. "We did some testing in local hospitals and it quickly became clear that this was a product that would work."
Mothers, families, and individual hospital staff such as maternity nurses have largely convinced hospitals to change their way of dealing with child loss. Families hear from their peers about a CuddleCot, hospice program or memorial service and then bring the idea to the doctors or nurses who care for them.
"Just like families who lose a child at the age of eight or ten, part of this healing process is seeing a child after it dies so that it can sink or close," said Francis. "It is the only time they are with this child and it is good that families are not rushed."
In honor of Selah, the pings have dedicated three cuddly beds and donate “Selah boxes” to hospitals for families who lose a child. The storage boxes contain a handmade blanket for the baby as well as a diary and a handwritten note to the family.
Like Ping, many local groups across the country have found ways to support grieving families by sewing grave clothes or writing original poems. Claudette Roberts is a longstanding member of Heaven & # 39; s Handiwork, a sewing group from the White River Christian Church in Noblesville, Indiana. They and about 25 others have been meeting twice a month for years, making blankets, quilts, and hats for nursing homes and other nonprofits. They recently added the items contained in Selah boxes to their work. "There are some members of our group who have suffered miscarriage or stillbirth and that is one reason (we were drawn to it)," said Roberts. "God has given us the gifts to do it and to be part of this ministry that is so wonderful and touches so many families in such a special way."
D.ede Flaherty is a Christian and pioneer of the perinatal hospice movement. Flaherty is a mourning director at Riverview Hospital in Indianapolis and has worked as a nurse for childbirth and childbirth for several decades. She never intended to take on grief, but after interacting with families, she saw a need and developed the position in her hospital.
"It was difficult at the beginning," said Flaherty, whose first projects included buying a bench for a healing garden outside the maternity ward so families could have their own room to mourn. "I had a few obstacles to overcome just to let administrators and doctors know that talking about child loss is okay." Her position includes coordinating counseling, organizing support groups, and providing resources for funeral planning and mourning, all of which were previously lacking. Flaherty said the scratchy, unofficial nature of her role – a part-time job as a full-time nurse – was also common in other hospitals.
However, some hospitals are striving to implement advanced care that includes bereavement and better psychiatric care options. Community Hospital North in Indianapolis started in 2018 with the introduction of a comprehensive program for later losses. Amy Wire, a vice president who oversees women's services, said hospitals may shy away from this type of care because of cost barriers or "lack of knowledge."
"You may not be aware of the impact this can have on a family that suffers a loss to spend this time with the baby so limited," said Wire. Community Hospital North regularly met mourning coordinators from its five hospitals to share ideas and best practices. Every hospital has a CuddleCot.
Wimmer from the Star Legacy Foundation said that costs are a big factor in slowly accepting programming or education – so most of the resources are donated by families. "Many hospitals are unwilling to put that kind of money into something that has not been scientifically tested," said Wimmer. "It is extremely rare for medical schools and nursing programs to have perinatal bereavement or policies as part of their training."
Wire said that some hospitals may also fear that the additional care "could create a struggle for nursing staff". After all, the bereavement goes beyond medical knowledge into time-consuming, uniquely sensitive and comprehensive patient care.
B.Rooke Martin is a news anchor from Indianapolis and a mother who lost her baby Emma to anencephaly in early 2019, resulting in an underdeveloped brain and skull. She went public with her story and held a ceremony in a church where anyone who had ever lost a child was invited to honor it there. The response from women across generations has been overwhelming.
"People write and say," I'm 83 years old "or" I'm 75 years old. "This is the first time I've written my child's name … I can't tell you how much healing this is to see them recognized, ”Martin said in an interview last year.
Research suggests that perinatal care after loss can lead to better mental and spiritual health for parents. All CTs interviewed, from experienced nurses to spiritual healthcare leaders, agreed that the culture associated with infant loss has changed positively.
Some hospitals even offer grievance ceremonies for patients who lose their babies 20 weeks ago. Flaherty followed the example of maids of honor in larger hospitals and began coordinating such ceremonies for their families.
For later lost babies, some churches host life celebrations involving hundreds of mourners – friends, family, and community members who are united. These services are similar to funerals and often include gospel songs, scripture readings, short sermons, and dedications from family members.
"Those of us who affirm the value and dignity of children from conception have a responsibility to help families mourn," said Warren, the priest. "Borrowing rituals and practices such as funeral services, prayers, and burial services is one way the Church can do this, but it is certainly not the only one."
Robert Lyons, a Catholic priest who has worked as a health chaplain in Indianapolis for 20 years, said the spiritual healing that comes from spending time with stillborn babies and spending time remembering them is profound can be.
"It gives people the opportunity to develop their own context and tell their own story," said Lyons, "and to invite God to be part of that experience with them in a very natural way."
Cathy Arnett, a mother in Bloomington, Indiana, who lost her first child to stillbirth over 20 years ago when she was 38 weeks old, taught her two daughters to remember the older brother they had never met . "When teachers asked about siblings at school, the girls always talked about their older brother in heaven," said Arnett. "And we celebrate his birthday every year."
Ericka Andersen is a freelance writer and mother of two in Indianapolis. She is the author of Leave cloud 9 and host the It's worth your time Podcast.
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