It’s a Baby Not a Bump: Being Sensitive to Infant Death

Infant Memorials

Before I retired from funeral service, I met with and provided support to thousands of grieving families but there is one thing I didn’t do more than a few times:  assist in planning a memorial for an infant. I believe the problem lies in an institutional mindset that miscarriage, preterm and newborn infant death is a medical event. It is an appalling emotional disconnect. Sure, expectant mothers utilize the expertise of medical staff and remarkable technologies but this is human life, not automobile repair.

Author image

The words of Fawn Briggs in her guest post on the forum, WantedChosenPlanned, express the personhood of an in utero infant. In I Miss Her So Much, Fawn emphasizes the joy of a relationship that begins from the moment of pregnancy realization.

“I had been up late unable to sleep and my sweet baby girl Phoenix Quinn had been so active.  I was having contractions so when my husband got up for work I asked him to stay home with me because I thought we would be meeting our baby early.”

I have learned so much by blogging and teaching as The Condolence Coach, and encourage readers to increase their sensitivity and skill in responding to different types of loss. One size does not fit all.

Death of a Child: age is irrelevant!

My lessons about what a parent feels at the death of a child began with book research; I met women who had faced tragedies and found unique peer support in organizations such as Parents of Murdered Children and Compassionate Friends. The urge to express sympathy is a beautiful part of being human but it is full of pitfalls. Saying “I know how you feel” is just one of them. Offering a rationalization--”at least you got to hold her”-- about the baby or child’s age as a formula to determine degree or duration of grief, is another one. Sheryl will never forget the knock on her front door and the message delivered by a uniformed police officer; losing her son in a car accident propelled her into Grief 101. She has never graduated from that ‘class’ but Sheryl and her husband did progress from simply receiving the support of other Compassionate Friends parents to being chapter leaders in their community.

Don't Hide the Life

I learned from Sheryl how important it is to recognize the person:  use the baby or child’s name and do not hesitate to talk about him or her.

 “Don’t try to protect the bereaved from their own feelings. My child’s memory will be with me forever and my emotions will be what they will.”

This concept is exactly what prompted me to reblog an essay by Alexis Marie Chute, 5 Lessons Little Kids Teach Us About Loss. A life is a life--even when the loved one is no longer present. She wrote:
“My seven and four-year-old kids bring up Zachary all the time. If someone dies, they mention Zach. If I am asked how many kids I have and I say, “Three,” I am immediately corrected. “No, Mom. You have four kids!” they say proudly. Sometimes I worry how others will respond to this behavior from my children, but then I give my head a shake. Talking about those we love, even if they have passed, should be the most normal thing in the world.”

Grief: Feel it, Don't Fix it

When I discovered and began writing about Angels Above Baby Gowns, a home-based volunteer organization supporting parents whose infant has died, I interviewed many women with infant loss stories. Through facebook, they learned how to donate a wedding gown or...they may have been fortunate to deliver in a hospital with neonatal bereavement support. I accompanied the Angels Above Baby Gowns team as they made a delivery of preciously crafted memorial gowns to a birthing center.

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We met registered nurse and bereavement counselor, Roxanne, who, for over a decade, has extended herself, often at personal expense, to make every baby’s life significant. Roxanne reminded us that 50% of all pregnancies are lost in the first three months. "One is too many," she lamented.

When a baby does not survive, Roxanne initiates steps to support the grieving parents:  a simple tag is placed on the door of the mother's room to remind staff and visitors of the bereavement.
She creates a decorative certificate called a Record of Birth, honoring the birth no matter the survival outcome. And, if culturally appropriate, she will take inked impressions of the infant's hands and feet.

Angels Above Baby Gowns are frequently used during the farewell period. At this hospital, parents are invited to bathe, dress, and cradle their baby. Roxanne explained:

"This is something you can't fix. There is no timeline and we don't rush a family. After dressing a baby in a beautiful gown or wrap, we take photos. A 'bereavement gown' provides tremendous comfort to parents and later, that gown will be a special keepsake--even bearing the scent of their child. Gowns for boys are uniquely accessorized such as having a tiny bow tie. 

Even though they are in shock, parents love every keepsake."

If you have personally experienced the death of an infant--or know parents who have, stay true to the wisdom you or they have earned, and gently teach others how to support families like yours because we all need to remember:  it’s a baby, not a bump. Remember, too, that in many cases, expectant grandparents also grieve this baby! My post, When Grandparents Grieve has had nearly 10,000 views!

Read more posts about baby gowns:

• Angels Above Baby Gowns: Soothing a Terrible Loss
• Angels Above Baby Gowns: Someday I'll Meet My Brothers
• Angels Above Baby Gowns: A Time to Tear and a Time to Mend
• Angels Above Baby Gowns: Heartbeats and Lightening Bolts

Thank you for caring!

5 Lessons Little Kids Teach Us About Loss: Guest post by Alexis Marie Chute

Once again, Grief Digest Magazine, produced by Centering Corporation has inspired me with an excellent article. 

What are your views and concerns about how children view death? 

• Do you feel youngsters should be protected from sad events? 
• Do you hire a babysitter when you have to attend a funeral or memorial service?
• Do you tell the kids you "have somewhere to go" instead of explaining the occasion? 

That's how it went in my childhood; my siblings and I did not visit a grandmother's deathbed or attend her funeral; when an uncle died in a farm tractor accident, my dad travelled alone to attend his brother's services and comfort surviving family. 

These are very common responses, but Alexis Marie Chute tells a different story. When her newborn survived only one day, her whole family faced the loss. Here is her story...

Alexis Marie Chute

 5 Lessons Little Kids Teach Us About Loss

by Alexis Marie Chute

I think it’s safe to say that our society does not prepare us for the death of a loved one, either in how to experience it when it is happening or in how to grieve afterward. We are taught to shelter the living from death as if it is an unfortunate reality, better ignored than embraced. Grieving individuals, and those that support them, often struggle for a vocabulary to talk about the loss and the resulting feelings. Instead we have a vernacular ripe with cliche that leaves mourners wanting and isolated, instead of comforted and encouraged.

I experienced all of this when I lost my son, Zachary, from a cardiac tumor at birth in 2010. He was minutes old. He died in my arms. That day was a stake in the road for me; I ceased to be my old naive self and began – what is called in grief literature – my “new normal.” As I look back on myself, I recognize that much of the trauma of Zachary’s death came from my childlike desire that we all will live forever and that everything will be okay. My parents did not talk to me about loss when I was little. I wish they had.

My husband, Aaron, and I have been honest with our living children about Zachary, what happened to him, how it affected us, and how we still miss him today. That discussion has opened the door for my children to think about death. Some of their responses have taught me valuable lessons.

1. Talk about the dead.

This sounds like something out of the Sixth Sense movie or the perfect set-up for being labeled the weirdo at the party. It shouldn’t be. Children are not predisposed (unless we teach them) to the negative societal taboos around loss. My seven and four-year-old kids bring up Zachary all the time. If someone dies, they mention Zach. If I am asked how many kids I have and I say, “Three,” I am immediately corrected. “No, Mom. You have four kids!” they say proudly. Sometimes I worry how others will respond to this behavior from my children, but then I give my head a shake. Talking about those we love, even if they have passed, should be the most normal thing in the world.

2. Accept death as a natural and beautiful part of life.

We have a cultural obsession with youth and beauty. This is one area, among many, where the cult of celebrity sets us up for heartache. We do not have public and prolific guidance to help us accept death as inseparable from life. I believe life and death are yin-yang, two equal parts of one complete whole. In contrast, our society has erected opposing notions of life and death as one being good and the other bad.

Children, however, when spoken to about death as a part of life, do not fear it as a scary monster to avoid, but integrate it into the fabric of their understanding. There are many natural parallels that children more innately connect with on this topic. The seasons are one example. Leaves fall from the trees each autumn and we have winter. Then new life grows again in the spring. A seed that is buried in the ground, just when we’ve nearly forgotten about it, sprouts and blossoms into a flower. In a short span of time a great grandparent passes and a new sibling birthed. This is all natural, cyclical, and connected.

3. Think about death and strive for personal understanding.

My older children used to go to a day-home while I worked. One day the woman who ran the home took a step closer to me than normal and in a hushed voice said, “I just wanted you to know, your kids were playing make-believe today and they said the baby-doll died. I made sure to tell them that they shouldn’t play like that.” Instead of being concerned, I was proud that my kids were working out their own personal understanding of our experience and what death means to them! They were doing that in the only way they knew how - through play. When I talked to them about it, I affirmed their actions and encouraged them to make-believe however they wanted. They were not distracting themselves or repressing their feelings on loss, like so many adults do, only to rack up steep therapy bills just to re-open their hearts in this expressive way.

4. Loss is a family matter, not only a solo experience.

The bonds between family are not severed because of loss. That is what my children have taught me. When my kids talk about Zachary, he “is” their brother, not past tense. We talk about how Zach lives on in our hearts. If we are discussing loneliness, my kids pipe up and say, “You are never alone because Zachary is right here,” as they point to their chests. I know they do process the loss in an individual way, we all do, but in mourning and celebrating Zach’s life, it is a family matter.

My daughter, Hannah, my seven-year-old, will draw a portrait of our family and, without prompting, include Zach in the picture. That is her solo action, but she immediately shows Aaron and me the drawing, and then hangs it from the fridge with magnets. As a family, on the anniversary of Zach’s birth, and death, we take the day off from work and school and bake a cake, go swimming, plant a tree, and just generally cuddle-up and spend quality time together. I believe because of this, the kids do not feel they carry their grief, or the weight of death, all on their own. It is a shared experience and therefore shared support and love.

5. Speaking of love… It never dies.

My kids often say, “I love my whole family! I love Mommy and Daddy, and Hannah, and Eden, and Luca, AND Zachary!” They talk about loving their unseen brother. They talk about missing him and wishing he was alive and with us. In these moments, I take a deep breath, pause from busyness, and feel my own love for Zachary and the throb of ache in missing him and the life I had hoped we would share together. Yes, my child died and that is my personal tragedy, but the love I have for him can never be taken from me. Though society uses phrases like “move on,” I choose to take the lead from my kids. Zachary is a part of us and we love him – present tense, and that is okay.

Expecting Sunshine, A Memoir by Alexis Marie Chute

💔💕💗  

In her memoir Expecting Sunshine, A Journey of Grief, Healing, and Pregnancy After Loss, Alexis shared her journey--from pregnancy and the discovery of Zachary's in-utero condition, to the family's decision to always love him as son and brother: present tense!

Click here to learn more about the book

 ABOUT THE AUTHOR:
Alexis Marie Chute is the author of the award-winning memoir Expecting Sunshine: A Journey of Grief, Healing and Pregnancy After Loss, available on Amazon and wherever books are sold. Alexis Marie is a writer, artist, filmmaker, public speaker, and bereavement expert. Learn more about her book and documentary, Expecting Sunshine: The Truth About Pregnancy After Loss, at www.ExpectingSunshine.com. She is a healthy-grief advocate educating others on how to heal in creative and authentic ways. You can also connect with Alexis Marie Chute on Facebook, LinkedIn Twitter, Instagram, Pinterest, Tumblr, and YouTube.

RESOURCES:
 Visit Alexis' bereavement blog:  www.WantedChosenPlanned.com

Condolence Coach Photo

The Condolence Coach did a 5-part series on how to understand and respond to a family facing miscarriage, stillbirth, and infant death:

1. Angels Above Baby Gowns: Soothing a Terrible Loss
2. Angels Above Baby Gowns: Someday I'll Meet My Brothers
3. Angels Above Baby Gowns: Delivery at a Birthing Center
4. Angels Above Baby Gowns: A Time to Tear and a Time to Mend
5. Angels Above Baby Gowns: Heartbeats and Lightening Bolts

And remember that the grieving family includes grandparents:

When Grandparents Grieve

"Punk Bird" by Suzy St.John

A widely celebrated project for kids is the creation of a memory box. Here's how to introduce the idea:  Grieving Children and the Memory Box Condolence Gift. 

In this season of giving thanks, I say to all readers:

Thank you for caring!

Angels Above Baby Gowns: Heartbeats and Lightening Bolts

A few of the sweet creations

Readers of The Condolence Coach may remember my introductory post, Angels Above Baby Gowns: Soothing a Terrible Loss. This organization uses donated wedding dresses to sew burial gowns for infants.
I wanted to learn more about the women who gave their wedding dresses in support of parents whose baby didn't come home from the hospital. Teri and Melanie shared their stories in Angels Above Baby Gowns: Someday I'll Meet My Brothers. Pamela and Sharlene shared their stories in: Angels Above Baby Gowns: A Time to Tear and a Time to Mend.
How do hospitals get the angel gowns? Read: Delivery At A Birthing Center

Some moments in life come like lightening bolts. Janene Johnson has been struck, twice. 

Angels Above Baby Gowns: A Time to Tear and A Time to Mend

Readers of The Condolence Coach may remember my introductory post, Angels Above Baby Gowns: Soothing a Terrible Loss. This organization uses donated wedding dresses to sew burial gowns for infants. 

I wanted to learn more about the women who gave their wedding dresses in support of parents whose baby didn't come home from the hospital…Teri and Melanie shared their stories in Angels Above Baby Gowns: Someday I'll Meet My Brothers. Janene shared her story in Angels Above Baby Gowns: Heartbeats and Lightening Bolts.

[Source]

To everything there is a season, and a time for every purpose under the heaven.

Ecclesiastes 3:1

A Time to Tear and a Time to Mend

Part 1.

“I was born when my mother was 37-½ years old, a ‘welcome surprise.’”

This is how Pamela Conley begins the story of her mother, Margaret, who married the boy-next-door, Jim, in 1946, after his service in World War II.

Even before they were childhood sweethearts, they were friends in a Detroit neighborhood swarming with children. Living a stone’s throw from Clark Park, Margaret and Jim enjoyed organized Parks & Recreation activities: ping pong, archery, softball, arts and crafts. And when the park's big goldfish ponds froze over, they would ice skate, taking breaks in one of the pavilions where the warmth of hot cocoa and a pot belly stove soothed frigid fingers and toes.

During her wartime engagement, Margaret helped out on her parents’ Rockwood, Michigan farm. With a strong sense of purpose in contributing to the family’s livelihood, Margaret drove farm equipment and tended chickens. In the evenings, she wrote letters to her Army beau, Jim. “My mom saved everything, and I have all of his letters to her,” marveled Pam. “My attic holds a lifetime of memories--from mom's high school graduation gifts to their wedding guestbook and gift registry.”

Margaret's wedding day

This legacy of valuing what one has, rings true for Pamela, who resides in the home where she grew up. “My bedroom set is 68 years old,” she noted.

A lovely dress has a new purpose

“Tradition is not so important to young people-- their world is full of disposables and replaceables,” was Pam's lament.

Which is why the discovery of Angels Above Baby Gowns on Facebook excited her. “I feel the Lord led me to find this perfect opportunity where Mom’s wedding gown can be put to good use. It wasn’t properly preserved so there are some areas of damage, but there is beautiful lacework and beading.”

Indeed, when the volunteer seamstresses at Angels Above Baby Gowns receive a wedding dress, they focus on repurposing possibilities, not rejection. In addition to panels of satin, tulle and lace, decorative elements are harvested: buttons, beading, trims, appliques, flowers… the transformations and re-creations are endless. The comfort they afford grieving parents is priceless.

Even a rose at the neckline is handcrafted

Lace from Margaret's dress became flower parts

“Mom would be thrilled, and I am so comforted.”

“This fills such a gap!” Pamela observed. She is getting more involved, too, by participating in a recent delivery of angel gowns to an area hospital. Pam has also offered the organization her mother’s old cabinet sewing machine. “If Dawn [Dawn Lafferty, founder] can refurbish it for use, she is welcome to it!”

A Time to Tear and a Time to Mend

Part 2.

“I had a pre-term baby--but brought the baby home!”

In 1987, Sharlene Clair gave birth to Bryan, 6 weeks early. Weighing in at 4 pounds-15 ounces, he failed the apnea test, and remained in the hospital, on oxygen, for two weeks. "Being home without my baby was hard, but I had a three year old at home, too. I cheered myself up by going to Toys R’ Us and getting things to pamper Bryan. I was never afraid that he wouldn’t come home.”

Shar holds newborn Bryan

A boot-size baby

AOP, Apnea of Prematurity, is common in premature babies because their lungs are not fully developed. But the NICU protocol in 1987 allowed babies to be discharged to home with an apnea monitor. 

Example of an apnea monitor

The band of foam around the chest has leads measuring heart and breath rate; if the rates become too low, an alarm on the monitor sounds.  

Once her son came home, monitoring was Shar’s responsibility. “The hospital neonatal nurses were wonderful; I could call at any hour, and I kept a journal. We had to have babysitters who were CPR trained. It was too stressful for many of them.”  But at the age of 11 months, Bryan graduated off the monitor.

“We have more stories to laugh about than cry about.”

Shar is not a stranger to dramatic life moments and the detours they bring. In 2007, her frail parents came from Arizona for a wedding--and stayed. Realizing they needed to step up with support, Shar and her husband, Bob, moved to a one-level home and welcomed her parents. Since her dad’s passing, Shar’s mother, Bobbie, still shares life with them.

Sharlene and Bob at the altar

Sharlene’s first exposure to the angel gown concept was the Facebook page of a Texas group. Recalling how fortunate she had been with the survival of her premature son, Shar was preparing to ship her dress to the Lonestar State. Along came the ‘detour’ of discovering the Michigan group, Angels Above Baby Gowns. “I was so excited to find a nearby Michigan organization!”

“Their passion touched my heart!”

The posting for a local gown-drop-off picnic became a mother-daughter outing. Shar and Bobbie gave the lovely wedding dress to founder, Dawn Lafferty, and discovered they each retired from the same company.

Isn’t a wedding dress a sentimental keepsake?

“I had no second thoughts about donating my dress,” shared Shar. 

“I thought about using it to have a baptismal gown sewn for a grandchild, but it wasn’t the right thing for our family.

This is a great cause!”

November 2017 UPDATE:  In the words of founder, Dawn, "Angels Above Baby Gowns is still going strong. We are now in over 350 hospitals and in 5 countries. We grow bigger everyday."

Read the story of where the angel gowns go: Delivery At A Birthing Center

LEARN MORE!  This link provides resources for parents grieving the death of a baby.

The Condolence Coach was inspired to write about Angels Above Baby Gowns by a woman who lost two grandchildren by miscarriage.  When Grandparents Grieve

Readers may also wish to visit this post about baby and children's death:  Two Too Many: Gone But Never Forgotten

When siblings experience the death of a baby brother or sister, these posts may provide good condolence guidance:  Grieving Children, Part 1,  and  Grieving Children, Part 2.

This post is a good review of responding to any child's death: 5 Things to Say When Death Strikes the Young

This is a peer support blog by and for parents grieving an infant: Wanted Chosen Planned

Keep the conversation going--share this post, and Thank you for caring!

Angels Above Baby Gowns: Delivery At a Birthing Center

Readers of The Condolence Coach may remember my introductory post, Angels Above Baby Gowns: Soothing a Terrible Loss. This organization uses donated wedding dresses to sew burial gowns for infants. 

Garden City Hospital

A bright, welcoming lobby

 On a late summer Monday morning, I arrived at the Garden City Hospital. It is bright outside and inside, too. Rushing past, a man chases boredom by giving his toddler a wheelchair ride. "Watch out for the crack!" he warns, though he's not referring to his drooping jeans.  

Angels Above Baby Gowns is making a delivery.

Once the Angels Above Baby Gowns team arrives, we head to the Birthing Center. Founder, Dawn Lafferty, organization secretary, Karen Pangborn, volunteers, Marie McNallen, Jennifer McDonald, and Andrea Moss are bringing 25 lovingly packaged gowns and keepsake gifts for distribution. The number delivered varies, as each contacted hospital will estimate their need for one year. Certainly, more--including special needs, can be requested.  

Roxanne Sweet, R.N.

We are met by registered nurse and bereavement counselor, Roxanne Sweet. On staff at Garden City Hospital for over nine years, this woman has extended herself, often at her own expense, with passion and purpose since 1982. 

Roxanne reminds us that 50% of all pregnancies are lost in the first three months. "One is too many," she laments. 

When a baby does not survive, she initiates steps to support the grieving parents.

Door tag

1. A simple tag is placed on the door of the mother's room to remind staff and visitors of the bereavement.
2. Roxanne creates a decorative certificate called a Record of Birth, honoring the birth no matter the survival outcome. 
3. If culturally appropriate, she will take inked impressions of the infant's hands and feet.

The Bereavement Gown

 Angels Above Baby Gowns are frequently used during the farewell period. At Garden City Hospital, parents are invited to bathe, dress, and cradle their baby. Roxanne explained:

"This is something you can't fix. There is no timeline and we don't rush a family. After dressing a baby in a beautiful gown or wrap, we take photos. A 'bereavement gown' provides tremendous comfort to parents and later, that gown will be a special keepsake--even bearing the scent of their child. 

Gowns for boys are accessorized

Even though they are in shock, parents love every keepsake." 

 Keepsakes

When a baby does not go home from the hospital, memories should.

Roxanne describes this need as: "Too painful to remember, too precious to forget." She coordinates the creation of hand painted memory boxes which are given to parents at the time of discharge. Each box is filled with mementos:

A creation of The Village Painters of MI

Inked impressions, the gown or wrap, remembrance cards, and special gifts provided by Angels Above Baby Gowns.

Handmade bracelet sets: one for mom, one for baby.
Volunteer, Andrea Moss enlists her 3 kids in beading!

Angel baby ornaments, made by volunteers

Jennifer McDonald (above, left) washes donated dresses and prepares them for cutting; she also cuts gowns, sews, and helps take pictures of finished items. Marie McNallen (above, right) also helps wash wedding dresses, cuts out pattern pieces, and assists with photography. 

Marie spends countless hours, at home, crocheting hundreds of hats, and many wraps, using numerous crochet stitch styles. A hat is included with each gown.

A wrap is suitable for a tiny infant

Garden City Hospital's Birth Center Director, Jennifer Schaible, R.N. (left)

joins Roxanne to thank Dawn Lafferty for the generous supplies. 

Wedding dress donations are so important to this mission of comfort! 

Roxanne and Dawn marvel at a gown made from

the beaded bodice of a donated wedding dress.

 "Our goal was to do 200 gowns by the end of 2014, and we've done 600!" Founder, Dawn Lafferty 

I wanted to learn more about the women who gave their wedding dresses in support of parents whose baby didn't come home from the hospital…Teri and Melanie shared their stories in Angels Above Baby Gowns: Someday I'll Meet My Brothers. You will also be moved by the stories of Pamela and Sharlene shared in Angels Above Baby Gowns: A Time to Tear and a Time to Mend; and Janene tells the story of her son, Keegan, in Angels Above Baby Gowns: Heartbeats and Lightening Bolts.

LEARN MORE! Angels Above Baby Gowns, Garden City, MI

November 2017 UPDATE:  In the words of founder, Dawn, "Angels Above Baby Gowns is still going strong. We are now in over 350 hospitals and in 5 countries. We grow bigger everyday."

The Condolence Coach learned about Angels Above Baby Gowns by a reporter who lost two grandchildren to miscarriages. Read When Grandparents Grieve.

Readers may also wish to visit this post about baby and children's death:  Two Too Many: Gone But Never Forgotten.

When siblings experience the death of a baby brother or sister, these posts may provide good condolence guidance:  Grieving Children, Part 1,  and  Grieving Children, Part 2. 
If you need a good review of responding to any child's death, read: 5 Things to Say When Death Strikes the Young

This link provides resources for parents grieving the death of a baby.

This is a peer support blog by and for grieving parents: Wanted Chosen Planned

Keep the conversation going--share this post, and Thank you for caring!