Johanna’s Life

The Nistler family, who live in Fargo, continues to mourn the death of newborn Johanna, who died shortly after birth in 2006. From left, Sara, 16, Rachel, 14, Brenda, Katie, 12, and Pat.


By Janelle Brandon
Photography by Ann Arbor Miller

It was the day before Valentine’s Day in 2006 when a giddy trio of young Nistler sisters learned they were going to add another sibling to their pack.
Their parents, Brenda and Pat Nistler, had something to show them.
“Mom and Dad set a picture face-down in front of each of us,” Sara, now 16, remembers.
“I told the girls that Mom got her picture taken today,” Pat says of the day they broke it to their kids another baby was on the way.
“Mom hates getting her picture taken, so I knew something was up,” 12-year-old Katie says. Rachel, 14, nods in agreement.
The girls remember turning over the photo and seeing an ultrasound image. It was a little baby, their tiny new sister. The South Fargo Nistler home erupted with dancing, jumping and happy tween screams as the family of five prepared to add a sixth member.
‘Shocked and Elated’
“We were shocked and elated when Brenda and I learned we were expecting,” Pat, a manager with Grouser Products in West Fargo, says.
Brenda was diagnosed with rheumatoid arthritis during her pregnancy with the youngest, Katie, and was a bit apprehensive about her overall health, as she was now eight years older.
Even so, the first few months of pregnancy were “absolutely blissful,” though the elation quickly dissipated when bad news hit quick and hard.
“Pat and I went to the routine ultrasound halfway through the pregnancy. Shortly after it began, we knew something was wrong,” Brenda says. “The technician wasn’t saying anything to us and then called in another person to look at the screen.”
Unfortunately, Pat had to leave to pick up one of their daughters during the ultrasound so Brenda was left alone with her thoughts.
“The doctor asked me to meet in her office, and I knew that couldn’t be good because I didn’t have an appointment scheduled,” Brenda says. “She ordered a Level II ultrasound at Abbott Northwestern Hospital for us in the Twin Cities.”
Receiving the News
Instead of waiting for the second ultrasound, they broke the news right away to their children and parents.
“We told them that we don’t know what it is yet, but there is something wrong with the baby,” Pat recalls.
“You told us about it over blizzards at Dairy Queen,” Sara says.
The ultrasound confirmed that the Nistler’s baby girl had Trisomy 13 (also called Patau’s Syndrome), which in the majority of cases, is a terminal diagnosis. According to the National Institute of Health, Trisomy 13 is a genetic disorder in which a person has three copies of genetic material from chromosome 13 instead of the usual two copies. Trisomy 13 occurs in one in 10,000 births and is not inherited. Many internal and external birth defects are common in Trisomy 13 babies.
The baby wouldn’t live much past birth.
“The girls wanted to name the baby Hanna. We eventually chose Johanna, which means ‘God is gracious,’ ” Brenda says. “My mother made flannel blankets, not only for Johanna, but also for Sara, Rachel, and Katie.”
The Nistlers prepared a birth plan that included a request only the family be allowed to hold and bathe Johanna. Their priest from Nativity Church in Fargo was put on call to attend the birth and bestow the sacrament of Baptism on Johanna. Godparents were chosen and provided much-needed spiritual support.
“We made funeral plans, always hoping for a miracle and found a special photographer to take pictures of Johanna at birth,” Brenda adds. “I had gone through the exercise of making plans for my own funeral a year before I got pregnant, so we had a long list of lovely songs to pick from for Johanna’s funeral service.”
The young girls shared the news of Johanna’s Trisomy 13 with very close friends but were protective of sharing with everybody.
“My friend’s mom got pregnant at the same time and kept bringing pictures and things to class. I just didn’t say anything because I didn’t want to rain on the parade,” Sara says. School was out for the summer so there weren’t many questions asked about Johanna. Those would come later when the girls returned to school after her death.
‘She Lived for 33 Minutes’
Johanna Grace Nistler was born on September 4, 2006 at 11:23 p.m. (Labor Day). She weighed five pounds, six ounces and was 19 inches long. She lived for 33 minutes.
“That time was so surreal to me,” Brenda recalls. “It is impossible to put into words the emotions felt during those short minutes of Johanna’s life. I remember thinking and saying over and over, ‘She’s so beautiful!’ ”
Though many Trisomy 13 babies have physical anomalies, Johanna’s family reveled in her beautiful body. In place of a nose, Johanna had a proboscis and her eyes never opened.
“Her tiny mouth was so reminiscent of those of her sisters,” Brenda says. “We were surrounded by family and friends and the whole room just seemed to radiate in the splendor of creation, and in the back of my mind I knew this moment would not last long.”
Smiling, tears and loving took place as time slowed and Brenda became aware of life with Johanna slowing.
“It was crazy to finally see her,” Sara says. “I loved being able to actually touch her while she was alive.”
At this time, the Nistlers’ priest began to pray and led the family in singing the hymn “On Eagle’s Wings.”
Toward the end of the song, Johanna passed away. “She never left my arms,” Brenda reveals.
Returning to Life
Nativity Church was packed to the gills for Johanna’s funeral with family, friends, and even people the Nistlers had never met before.
Brenda’s milk came in during the service and she lamented not being able to nurse Johanna, a stinging reminder of the pain of motherhood and the incredible loss she had endured.
Johanna’s death brought peace for others.“An older woman approached me and said, ‘I buried my baby with yours,’” Pat says. “She had a baby die a long time ago, but it was different then, and a funeral wasn’t held.”
Johanna was buried on a gorgeous late summer day at sunset. Bubbles were blown at the graveside.
“It was hard to leave,” Rachel shares.
Because of Johanna, the Nistlers have dedicated a tremendous amount of time to spreading the word about perinatal hospice. Both Essentia Health and Sanford have perinatal programs to help families plan and prepare for the loss of a child.
“Johanna brought us so much joy and love, far outweighing any grief we endure,” Brenda says.
Since then, Sara, Rachel, and Katie have grown into young women, conquered the bumpy road of adolescence, and learned how to cope with death. Now, the girls are more open about the experience and find a lot of relief praying and talking with friends and family.
“Death doesn’t bother me as much; it’s just a part of life,” Katie admits. Sister Rachel agrees: “It has made me not so worked up about death.”
When asked if they ever feel angry this happened to their family and not some others’, Katie reveals wisdom rare in even the most sage adults and replies, “I wouldn’t want that to happen to anybody else.”
The other sisters agree, and Sara says, “I would never have wished this on another family. I’m just glad mine was strong enough to handle it.”
Here’s what the Children’s Grief Education Association has to say about grieving children.
Symptoms of Grief in Toddlers
•  Crying, sickliness, indigestion, thrashing, rocking, throwing, sucking, biting, sleeplessness
•  Misses contact, sounds and smells of the loved one
• Fears being abandoned
•  Notices changes in routine
How to Help Toddlers
• Cuddle and reassure the child
• Maintain routines
• Be gentle and patient
Symptoms of Grief in Three-to-Five-Year-Olds
•  Fear, sadness, insecurity, confusion,
anger, irritability, agitation, worry, guilt
•  Regressive behaviors, repetitive questions, withdrawing from others, plays out scenes of death, shows an interest in dead things, acts as if death never happens, intense dreams, crying, fighting
How to Help Three-to-Five-Year-Olds
• Allow the child to regress
• Hug the child and show affection
•  Encourage the child to play
•  Give simple and truthful answers
• Let the child cry and talk
Symptoms of Grief in Six-to-Nine-Year-Olds
•  Sadness, anger, loneliness, withdrawn, anxious, confused, guilty, fearful
•  Regressive behaviors, hides feelings, withdraws from others, has nightmares, difficulty concentrating, declining or greatly improved grades, aggressive acting out, protective of surviving loved ones
How to Help Six-to-Nine-Year-Olds
• Allow the child to regress
• Hug the child and show affection
• Answer questions truthfully
•  Encourage artistic expressions
• Let the child choose how to mourn
Symptoms of Grief in Nine-to-12-Year-Olds
•  Emotional turmoil heightened by physical change, sadness, anger, confusion, vulnerability, fear, isolation, anxiety
•  Regressive behavior and fluctuating moods, hides feelings, aggressive acting out, changes in grades, talks about physical aspects of illness or death
How to Help Nine-to-12-Year-Olds
• Allow regressive behavior
• Expect and accept mood changes
•  Encourage expression of feelings through art
• Find peer support groups
• Answer questions truthfully
• Offer physical contact
• Let the child choose how to grieve
Symptoms of Grief in Teens
•  Highly self-conscious, shock, sadness, anger, confusion, loneliness, vulnerability, fear, anxious
•  Occasional regressive behavior, mood swings, hides feelings, acts like death never happens, aggressive acting out, withdrawal from others, nightmares, changes in grades, impulsive and high-risk behavior
How to Help Teens
• Allow regressive behavior
• Expect and accept mood swings
•  Allow hidden feelings unless there is a risk of physical harm
• Be available to listen and talk
• Answer questions truthfully
• Find peer support groups
• Watch for high-risk behavior
• Allow the child to mourn in her own way.

In more severe cases, the behavior can have lasting consequences. Some severe symptoms of grieving in children that may warrant help are:
• The child loses interest in daily activities and events for an extended period of time
• The child is unable to sleep, loses her appetite, and is afraid of being alone
• The child acts much younger for an extended period
• The child excessively imitates the dead person
• The child repeats statements of wanting to join the dead person
• The child withdraws from friends
• There is a sharp drop in school performance or refusal to attend school.

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