“The Centers for Disease Control and Prevention’s (CDC) National Center for Health Statistics (NCHS) estimates that there are more than 1 million fetal losses per year in the United States, with the vast majority of these occurring before 20 weeks of gestation,” according to National Vital Statistics Reports – Fetal and Perinatal Mortality: United States, 2013. While “Florida’s 2012 infant mortality rate is 6.0 per 1,000 live births,” reports Florida Vital Statistics Annual Report 2012.
Fortunately, our community doesn’t have to go through it alone. There’s hope and support for healing.
During SIDS, Pregnancy and Infant Loss Awareness Month, we recognize our perinatal loss doula volunteers serving with Suncoast Hospice, a member of Empath Health. They’re specially trained to go into hospitals to comfort and advocate for expecting mothers and families whose babies are stillborn or not expected to live long after birth.
Karen Jackson is a longtime childbirth educator, birth doula and a founder and volunteer of our perinatal loss doula volunteer program. Earlier this year, she was honored with one of our Volunteer of the Year awards in recognition of her dedicated service. In this Q&A, Jackson discusses her drive for community education about perinatal loss along with the many ways she brings compassion and support to families in need.
Q&A with Perinatal Loss Doula Volunteer Karen Jackson:
1. What’s your background?
I’m originally from Kentucky, a coal miner’s daughter. My family moved to Florida and I grew up in the St. Pete area. My career mostly has been in health care. I worked as a branch manager for a home health agency and a medical assistant for a clinic, wrote grants and did in-service education with staff. Then I decided to be a childbirth educator, which I’ve done for the last 20 years.
For the last 17 years, I’ve taught childbirth and newborn classes at Bayfront Baby Place. It’s a fun class on everything you want to know about a newborn but were afraid to ask, including bathing, diapering and other newborn care. I’ve been a community educator with Johns Hopkins All Children’s Hospital for the last 15 years. In that role, I’m out and about at different events and I teach classes on water safety, wearing helmets, handwashing and other topics to students at elementary schools. They’re fun.
I heard about birth doulas after I became a childbirth educator. I attended an in-service workshop and felt I wanted to help support women during labor. I assisted with a couple of births and decided to become a birth doula, which I’ve done for the last 19 years.
2. How was our perinatal loss doula volunteer program created?
Jane Parker, my late friend and fellow doula, ran a program at a hospital she worked at in Chicago. She thought we were missing out here because there were a lot of women who needed just as much care at the end of life of their babies. Stacy Orloff, a leader at Suncoast Hospice, worked together with us to establish the program.
It took about a year. We went to hospitals including Bayfront, where I worked, and did in-service education with the medical staff, talked with office staff about what would help them, as well as shared our thoughts and ideas. We provided a lot of our own funding in the beginning and hospice was able to help us with grants, supplies and ladies who volunteer making beautiful outfits and other items for our babies. Another friend, Debi Lanning, joined us as a doula.
We went in and helped one patient who was going to have a stillbirth baby. Then, we started to get calls. When we first started we thought we’d maybe get a call once a month. Sometimes, we’d have four calls in a day. Over the past nearly 15 years, I think we’ve served close to 1,600 families. A lot of hospitals have a team but I think we’re one of the only doula-based perinatal loss programs in the country.
3. As a doula, how do you comfort and support mothers and families in their journeys?
Doulas are there to offer mental, spiritual, emotional and material support to dads and moms during labor. We act as a liaison so a mom knows all of her options at the hospital. These ladies need compassion and support when they’re going to have babies who aren’t going to live.
4. Is there a stigma around pregnancy or infant loss and, if so, what can you do to help?
Yes, there is. A lot is positive about our program. We can help families understand about loss. I think we’ve helped many ladies come to terms. So many times we go into a room to take care of a patient and that patient’s mother, aunt or other relative is there and they’ll say it brings back memories of what happened to them years ago. In earlier times, the medical teams would take the babies away and there weren’t many opportunities for the mothers to say goodbye. I think we’re a shoulder to cry on and relief in their hearts as to what happened in their past. It gives them a chance to start to heal or re-heal.
I think we’ve been able to educate people on the idea that, yes, the grief is still there for these mothers. They’re attached. It’s a true grief. We get to educate doctors, nurses and new residents on how to be sympathetic and to not treat these ladies in the same fashion as live births. We talk about perinatal loss and how we can help them in what they do on the floors.
To me, the proudest part of our program is educating people.
5. Who currently serves on your program team?
The other doulas that make up our team are Debi Lanning, Karen Howard and Enee Abelman. Debi has been with me from the beginning. Sandy Hart is one of the hospice volunteers who makes lovely clothing, small blankets and small diapers for our babies. The support from many staff at hospice is invaluable. My sister-in-law has also assisted. There are a lot of people involved behind the scenes in what we do. We couldn’t do it without them. It’s a team.
6. What have been your most valuable lessons volunteering in perinatal loss?
I’ve learned that doctors in residency don’t generally take a class in perinatal loss, so it’s up to us to educate them. Many times docs come in and say they’re going to start the induction and take care of their pain. They need to go in and say, “I’m sorry your baby isn’t going to live.” I’ve learned that this type of loss happens more often than you think. The grief is real. I’m so very proud of this service. It’s wonderful that the hospitals we serve welcome us in to be with the patients and families.
Want to help provide comfort to patients and families? Join our perinatal loss doula volunteer team. Sign up for a volunteer orientation.