Dr. Joanne Cacciatore says that "there is no greater tragedy, no more devastating human experience, than the death of a beloved child." She not only believes this, but lives it as well. On July 27, 1994, her daughter, Cheyenne, was born still -- on her due date and during labor. At that time, Dr. Cacciatore, who was a stay-at-home mom to three living children, fell into the deep pit of grief that almost nothing seemed to help. But after weeks of searching, she found help through a national grief group. At that point, she never wanted another parent to go through these same feelings of loss and desperation that she was going through. So she did something about it.
Founder of Mothers in Sympathy and Support Foundation
In 1996, Cacciatore formed the MISS (Mothers in Sympathy and Support) Foundation, a non-profit, volunteered-based group that provides ongoing and immediate support to parents, children and families who have suffered the loss of a child or whose child is facing death. The 501 (c)3 corporation also provides:
- Risk management programs to help decrease infant mortality and improve maternal health.
- Empowerment through community volunteerism
- Economic assistance
- Public policy analysis and legislative call-to-actions
- Educational opportunities for medical and other professionals
Today, the MISS Foundation, which is based in Phoenix, Arizona, is standing strong with a diverse board of directors that includes medical personnel, safety officials and family members who have all experienced the loss of a child. The group also sponsors face-to-face support groups around the United States and in parts of Canada, England, Mexico and France. Its private online forum has more than 4,000 members.
Dr. Cacciatore, who also has a master's degree in social work and was awarded a Fellowship on Thanatology, took some time from her busy schedule to chat with LoveToKnow Death and Dying about the MISS Foundation and her work with grieving families.
Standing Up for Grieving Parents
Why did you start the MISS Foundation?
"When my daughter died, there were no systems in place providing support for me or my living children. So I knew that if I lived through it, I would have a moral obligation to do something. I am an action-oriented type of person, so I had to do something. So, I started the foundation. I initially started training medical professionals because I had a less than ideal experience in the hospital with my caregivers. I wanted the doctors, nurses and social workers to know better ways to deal with families (who have lost a child). I went around and spoke at hospitals, but I realized that I needed to further my education."
Back to School... and Then Some
Dr. Cacciatore knew that if she really wanted to change how the medical profession worked with families who have lost children, that she would have to be educated; she would then have a comprehensive understanding of the grief process. So, she went back to school and received two bachelor's degrees, a master's degree and in October 2007, received her Doctorate of Philosophy in Human Science. In 2007, she also received the prestigious Hon Kachina Award for her volunteering and work with families in mourning.
How did the education help?
"Slowly, over time, the professionals became more trusting -- using strategies and using protocol that I was offering them. They saw that families were benefiting from the information. So, they started sending people to me, and soon I was getting five or six phone calls a day."
Support from the MISS Foundation
Within a year of creating the MISS Foundation, Dr. Cacciatore knew she wanted to reach out even further to grieving families, so she started her first support group in Arizona. And within a few years of that, she entered the World Wide Web and created a private forum that today not only reaches out to bereaved parents, but to other family members as well including grandparents, siblings and aunts, uncles and cousins.
Tell me about the support groups and how they've grown.
"I think within a year, we had 25 members, and within two years, one group was up to 55 members. So, we split the group (to form a second group), and then we split it again and again. We now have more than 75 support groups internationally."
Like the in-person support groups, the MISS Foundation's online forums offer help to those who have lost a child at any age or to those whose child is facing death. Forums include:
- General bereavement
- Loss of a teen or adult child
- Pregnancy after a loss
- Parenting after the loss of a child
- Help for children who have lost a sibling
- Support for parents whose loss is not so recent
How have the forums helped grieving families?
"They are a great alternative to in-person support groups. They are great for people who are in remote areas with no support groups nearby. The forums are made up of people from all over the world. There are so many cultural differences and rituals. But these bereaved parents feel so many of the same things despite their culture and where they live. It's like they have this automatic connection with one another because there's no possible way someone who has not experienced the death of a child could understand how devastating it is."
Fighting for a Child's Birthright
When Dr. Cacciatore's daughter was born, the family never received a birth certificate, only a death certificate. There would be no record of Cheyenne's birth anywhere because she never took a breath outside of her mother's body. In other words, it was as if the child never existed.
So, Dr. Cacciatore and members of her foundation created the MISSing Angels Bill and started fighting one of their biggest battles ever -- the U.S. government. Their goal? To make sure that every baby who is born still in the United States is recognized with a Certificate of Birth Resulting in Still Birth (or its equivalent). The outcome? As of December 2007, 21 states are now offering parents of born still children this certificate in addition to a death certificate.
What will this legislation do for parents of children who were born still?
"We want to leave our mark on the world... a footprint on the world. And this will help do that. This is for babies who died during birth or right before birth. The mothers of these babies prepared for these children. Their bodies accommodated the baby's arrivals. Everything was prepared. Then they go to the hospital and their baby dies during childbirth. They go through labor only to deliver a baby who is dead. The family is issued a death certificate, but how do you die if you have never existed? How can you deny their existence? These women all gave birth. To deny this baby's birth is an incredible slap in the face. I think this is an incredibly insensitive and untrue assertion. If a woman gives birth to a stillborn baby, she should be allowed to get a birth certificate. That relationship between mother and baby is sacred and should be honored."
The Future for Dr. Cacciatore and the MISS Foundation
Unfortunately, the need for support following the death of a child no matter what age -- whether it be from still birth, miscarriage, SIDS, suicide or even cancer -- will never change. So the world needs to change in order continue offering support in these times of tragedy. According to Dr. Cacciatore, "someone has to help... someone has to help the community."
The MISS Foundation plans to continue to offer its support to bereaved families for as long as it is needed. As for Dr. Cacciatore, she currently serves as the program coordinator in the College of Human Services at Arizona State University. She also is a researcher studying the effects of trauma and traumatic experiences on the brain. She has authored five books and is a founding member of the Elisabeth Kubler-Ross Foundation. In addition, she has served as chair for the Sudden Infant Death Advisory Council and is a member of the Unexplained Infant Death Advisory Council.
For More Information
If you are a professional, bereaved parent or family member, you can contact the MISS Foundation by:
- International phone: (623) 979-1000
- Toll Free in U.S.: (888) 455-MISS (6477)
- Fax: (623) 979-1001
- Written inquiries: P.O. Box 5333, Peoria, Arizona 85385-5333
- E-mail: firstname.lastname@example.org