Last month I wrote a blog for the Huffington Post discussing what to do with personal items and pictures after a loss. In response to this a reader commented that she had a stillbirth and wished she had kept more of the items she had prepared for her baby. I was moved by her comments and prior to booking our next Open to Hope cable television show I reviewed the articles and radio shows we have posted on stillbirth, but noted that we lacked a television show on the topic.

In order to find a guest with expertise on this tragic subject, I contacted the leading organization in the field, First Candle. I was greatly impressed by their quick response. Not only were we able to have the Executive Director, Chris Blake, on a recent television show, but Brooke Smith also joined us. She is the founder of Knot My Baby. Brooke, who suffered a stillbirth with the support of First Candle, has gone on to give back and find meaning in her loss by running a group for other parents who have had a similar experience. According to First Candle’s web site: “Stillbirth is the death of an unborn baby that has been in the mother’s womb for more than 20 weeks. More than 25,000 babies are stillborn in the United States each year”.

Giving Back

Like Brooke, as a result of the death of our teenage son, my husband and I looked for ways to help and later started a chapter of The Compassionate Friends in Northern California. The Compassionate Friends has over 700 chapters helping bereaved parents, siblings and grandparents. Seeing the need for a broader mission, we launched a family foundation, Open to Hope, with the mission of helping people find hope after loss. We are now in partnership with The Compassionate Friends and through this partnership we have been able to reach hundreds of thousands of bereaved families and individuals including those who have suffered a stillbirth.

Nursing Background

Stillbirth and pregnancy loss were areas of health care that I was working in when our son was killed. At that time, I was on the faculty of the University of Rochester School of Nursing serving as a nursing consultant to the Medical Center. As a masters-prepared nurse, I was at times called to work on care plans for mothers who had lost babies to stillbirth, miscarriage and post delivery. I happily found that the maternity nurses were some of the most caring and dedicated nurses in the hospital. It was always very sad time when a pregnancy ended in a stillbirth or death after delivery.

After a baby’s death, the nursing staff took the mother to a “non-maternity” floor so they would not hear the babies cry or see them delivered to their mothers for feeding. Those were the days when you stayed in the hospital for four days or more post delivery. This gave the staff time to support the mother and other family members during those dark, unhopeful days of grief as the mother’s body began to adjust to hormonal changes such as milk let down.

Family History of Still Birth

Stillbirth and early baby death have touched my own family. My aunt Lucy had an infectious disease and delivered a baby boy she named Clark who died several weeks post delivery. On my husband’s side of the family, my father-in-law told us about how my husband’s older brother, Clem, was a stillbirth because the cord was wrapped around his neck and arm. In those days, it was not unusual that my mother-in-law did not see the baby, and I often heard her comment that those who had seen Clem said he was a “perfect” baby. This pleased my father-in-law as he felt he had saved her the pain of knowing their baby had a withered arm. Today, it is seen as important to give mothers, fathers and other family members the option of seeing and holding the baby, giving them time to say good-bye.

When I was pregnant with my second child, my sister-in-law Mary was also pregnant with her second child. Our due dates were within days of each other. I had spent the summer visiting my family, and I remember Mary and I complaining about pregnancy and the heat. After the summer, I returned home ready to deliver my baby.

Several weeks later, I received a call from my mother. Mom said that Mary had been concerned that the baby was not moving. She visited the doctor and found there was no heartbeat. This was a week before her due date and she had to go through the delivery of a deceased baby. After delivery, it was discovered that the baby had a birth defect.

My heart went out to her and my brother. We called and sent cards and on the first anniversary of the birth we sent flowers. By coincidence, we had both chosen the name Rebecca if we had girls. I look at my Rebecca today and think of what a sad day it was for Mary and for all those who suffer stillbirths. I was not in town when Mary’s baby died, but I heard they had a graveside service. In preparation for this article, I called Mary and asked if she would mind if I mentioned her experience. She seemed pleased that I would still remember and take time to write about her baby.

There is a lesson here: stillbirth is a baby, but talking openly about a stillbirth death is often avoided in our society. We love to hear that people remember. If the baby is named we also love to hear its name.

Ways to Remember

During an interview on our Open to Hope radio show, a woman who experienced a stillbirth spoke of how she arranged with the funeral home to bring her baby home for several hours after it was born. She put the baby in a crib they had prepared and rocked her in the rocking chair. On another show, we interviewed professional photographer Todd Hochberg. Todd specializes in perinatal bereavement photography, taking beautiful memory pictures for bereaved parents. Another radio guest who suffered a stillbirth spoke of giving back by going to hospitals and helping bereaved moms make memory boxes. The boxes often contain footprints, handprints, pictures, hair clippings, pieces of clothing and other things that remind them of their babies.

Multiple Losses

With in vitro fertilization and other technologies, stillbirth has taken on the issue of multiple fetuses. After successful in vitro treatment, our friend, Stephanie, was pleased to announce that she was expecting triplets. She already had one son and was looking forward to adding three boys to her family. In anticipation, she and her husband, Tim, had named the boys, Timothy, Tyler and Cody, so it was a huge shock when at eighteen weeks, she lost the babies.

While eighteen weeks is not technically a stillbirth, there are things we can learn from Stephanie’s experience. One is to remember that what one person finds supportive may not be of comfort for another. After her delivery, the staff put the babies on her stomach. Stephanie said that she was barely awake after being put out for the delivery and was shocked and upset at seeing the babies.

Today, seven years later, she says that the staff probably asked her, but she was barely awake and didn’t remember. She also said, “The babies were presented to me in a basket, in a warm fashion, but a lot of my displeasure resulted from the way they looked. They were blue and underdeveloped. I did not want to remember them that way.”

The staff also took a picture of them in the basket, which she tore up when she got home. On the positive side, Stephanie’s dad also saw the babies and said that it helped him bond with Stephanie and Tim’s loss. I helped Stephanie raise money to have another round of in vitro. She planned to try again, but after several years decided she was happy with her family as it was and donated the money to our foundation.

It has been seven years since Stephanie delivered the triplets and she has a full life and feels content with her decision to just enjoy her husband and son, Nick. She and the family occasionally visit the boys’ gravesite. They are supported by their faith and feel that someday they will all be united.

Making the Decision to Try Again

While some women like Stephanie make the choice not to conceive again after a stillbirth or miscarriage, there are other women like my mother-in-law and sister-in-law who went on to have successful pregnancies. There are also women like my daughter, Heidi, who after several pregnancy losses made a decision to adopt. For others having relationships with nephews and nieces can be highly satisfying. One of my dear friends, unable to have a baby, chose a career as dean of students at a prestigious private school. Through the years, she has continued to keep in touch with a number of past students and sees them as “my kids”. There are many ways of being a family.

What I Have Learned

This article would not be complete without my writing about what I have learned. When I first started writing about stillbirth, I wrote from my memories and then I decided that I needed to contact the people I was writing about. I thought people would be reluctant to talk about their experiences, but surprisingly I found openness and a willingness to share. It seems that no matter the age we remember our babies. Below are ideas that can be useful in helping the bereaved.

Tips On Helping Others After a Still Birth

• Show up.

• Don’t try to be profound; simply say you’re sorry.

• Listen to the bereaved and be sparing with your own stories and opinions.

• Send flowers.

• Send a meal.

• Don’t be afraid to ask about the baby.

• If they named the baby, use his her name.

• Help out with other children.

• Give siblings the opportunity to discuss their loss.

• Be considerate and remember that the mother is recovering from a pregnancy and delivery.

• Acknowledge the anniversary of the stillbirth with a note or flowers.

• Be understanding if the mother is sensitive to being around other babies.

• Be supportive of the father and grandparents; they have also lost a baby.

• Consult and share the First Candle, The Compassionate Friends and the Open to Hope websites containing supportive information.

Stillbirth is a very personal and an individual experience; there is no right way. The important thing is meeting people where they are and supporting them in their journey, always remembering that there is hope after loss.

God Bless, Dr. Gloria