Three Little Birds conducts an annual survey of its registered members regarding their experiences at the healthcare level, postpartum and with the nest at Three Little Birds. This information is then used to evaluate our current programs and services, as well as brainstorm the development of new programs and services that represent our ever growing, diverse perinatal loss families in the regional family building community.
Survey objective - The goal of this study is to capture the experiences of perinatal loss families with healthcare providers, find solutions to the unexpected financial burdens they face, as well as offer a report to our grantors, healthcare system partners and other advocates on the actual needs of families that honors their personal, religious, cultural, ethnic and spiritual diversity.
Survey method - This survey was emailed to all registered member email addresses, as well as be posted in our online Facebook Group to be completed anonymously. Registered members are defined as individuals who elected to register to our free membership program who live in our service region (in the Philadelphia/Southern New Jersey metro region) and have experienced the following: miscarriage, infertility, stillbirth, neonatal loss, SIDs, and/or pregnancy after loss. Participation was optional, anonymous and no participants were compensated.
Survey dates – The survey was conducted from July 10 through August 6, 2023.
BELOW REPRESENT THE RESPONSES OF OUR ANONYMOUS SURVEY
Residence: Philadelphia - 11% Southern NJ - 82% Southeastern PA - 5%
Income level: Low - 17.6% Middle - 70.6% Upper - 11.8%
Did you experience financial burdens as a result of your loss: Yes - 52% No - 41% N/A - 6%
What unexpected financial burdens did you experience as a result of your loss?
(Note: some families have had multiple experiences and could select all that applied)
Cremation - (above $100) - 46%
Burial expenses (above $500) - 13%
Unplanned time off from work (without pay) - 26%
Postmortem pathology/genetic testing - 13%
Insurance premiums/deductibles - 40%
Medications/co-pays - 13%
Post-partum mental health support (out of pocket costs) - 66%
What has been your experience relating to perinatal loss?
(Note: some families have had multiple experiences and could select all that applied)
Miscarriage - 47%
Re-occuring unexplained miscarriage - 12%
Termination for medical reasons - 5%
Stillbirth - 70%
NICU loss - 11%
Primary infertility - 6%
Secondary infertility - 17%
Palliative care/carry to term - 5%
Bedside bereavement support through TLB- 17%
Bedside bereavement support through hospital - 12%
Pregnancy after loss - 23%
Twin loss - 5%
Current family building status
(Note: some families have had multiple experiences and could select all that applied)
Older children at home - 35%
Childless/not actively trying - 17%
Actively trying naturally - 40%
Actively trying with reproductive assistance - 17%
Currently pregnant after loss - 11%
Has delivered a baby after loss/rainbow baby - 5%
Did the hospital you delivered at have an established perinatal bereavement program?
(Note: some families have had multiple experiences and could select all that applied)
Yes - 41% No - 17% Some staff was trained/others not - 29% Unsure/unlikely - 17%
On a scale of 1 (low) -10 (high), what would you rate your healthcare provider during your loss experience?
Average/mean: 6.4 Median: 7 Mode: 4
Were you seen by a social worker during your experience?
Yes - 52% No - 37% Not applicable - 11%
On a scale of 1 (low) -10 (high), what would you rate Three Little Bird's support services and programs as it relates to your loss experience?
Average/mean: 9.7 Median: 10 Mode: 10
What options were provided to you to consider by your care providers at the time of your loss?
(Note: this question was multiple choice/response)
Bedside Bereavement Program through hospital - 47%
Bedside Bereavement Program through Three Little Birds - 17%
Autopsy/postmortem pathology options - 70%
Professional counseling/therapy - 11%
Lactation suppression options - 11%
Disposition options (burial/cremation) - 52%
Financial resources - 11%
Community/support groups - 35%
Postpartum support - 23%
Cuddle Cot or cooling bed - 3%
None - 11%
Not applicable - 5%
Which Three Little Birds support services and programs have you taken advantage of?
(Note: this question was multiple choice/response)
Bedside Bereavement Program (either on-site or retouching services) - 24%
Perinatal Palliative Care Program - 6%
Pregnancy After Loss Mentorship Program - 47%
Legacy Project Program - 29%
Perinatal Bereavement Training Program - 6%
Volunteer/Ambassador Program - 12%
N/A or none - 24%
Which Three Little Birds membership benefits have you taken advantage of/have you enjoyed?
(Note: this question was multiple choice/response)
Virtual support offerings - 59%
In-person support groups - 82%
Signature events - 64%
Spiritual readings - 12%
N/A or none - 12%
As it relates to Three Little Bird's free membership program...
(Note: this question was multiple choice/response)
I am pleased with the offerings of Three Little Birds - 82%
I'd like to see more support specific to my personal experience - 11%
I'd like more opportunities to get more involved - 11%
I'd like an opportunity to share my story - 5%
I'm hesitant to attend an event - 17%
I appreciate the support provided even if I am in the background quietly listening - 58%
I haven't found what is right for me yet - 6%
I'd like support specific to ethnic and racial minorities - 6%
I'd like more infertility support - 6%
COMMENTS FROM THE FAMILIES IN OUR NEST
In addition to multiple choice questions regarding their care, we offered families a space to share their thoughts and feelings anonymously. We have provided some of their comments below.
What are some aspects of your experience with your healthcare provider that had a positive or negative impact on your loss experience?
Acknowledging my partner and mother, providing options, taking time with us.
They were accommodating.
Labor and delivery did everything they could to support and be there for me during this time.
Bereavement team/nurses were extremely helpful/knowledgeable. Helped me to prepare for stillbirth delivery. Thoughtful, caring, supportive through the entire process.
Both times my doctors tried telling my my dates were off. They didn’t listen to me. And the second time the doctor sent me for a second ultrasound “just to make sure” it wasn’t viable.
The doctor who delivered my son, I had not met until the day in the hospital. I do not think she knew what she was doing because my healthy perfect son died as a result of her waiting to long to deliver him. She did not show much empathy or compassion for our loss.
Not having any sense of the mental health impact these losses can have.
Employees at the hospital were very supportive.
My provider brushed off my concerns for weeks before I gave birth. I constantly stated I was in pain and didn't feel good but was always told it's normal. Then at the hospital, I was met with robotic responses with no responses of even trying to save my son from the moment I got there was told there was nothing they could do and their only concern was for me. Which felt horrible as they weren't concerned for the baby.
I wish I had an Ultrasound done when I was at the hospital the night before for DFM the day before I went in for my scheduled appointment for my 27 week ultrasound.
Looking back at your experience, what are some things you wish you had known about (i.e, bedside support options, encouragement to meet and bond, printed options, information on support groups, what questions to ask funeral provider, etc.) that were not provided to you at the healthcare level?
Information on support groups
Personal care after birth. When to shower etc. i understand other peoples babies were being tended to but not much care once moved to maternity
Nothing was provided to me except what I asked for. I’m glad I knew to ask.
Bedside support -the warming cuddle cot was not working - and better photos than just an old digital camera. I wish they would have provided handprints and footprints.
I did have my son in the cuddle cot but I didn’t know I was allowed to hold him as long as I could. I asked for everything professional photos, molds of his feet, foot prints, hair samples. The nursing staff was great and one suggested some of these ideas.
Mental health resources.
I wish I had known about Three Little Birds. I don't have many pictures. I also wish I had chosen to do a visitation with my son at the funeral home for family and friends.
That I could leave my OB and go to another, ask for further review of everything, information on support groups and therapist and further support in general.
No one at the hospital talked to me about lactation after having my stillborn. It was an incredibly painful experience physically and emotionally when my milk came in three days after leaving the hospital.
I wish I knew about Three Little Birds so that they could take better pics of me with my twin sons.
Info on support groups; even just the term “termination for medical reasons” to better understand my experience.
What support, resources or comfort/support items do you wish your hospital provided? If you could go back, what would you have done differently? Do you have any regrets?
More support after in maternity
Anything. Our circumstances were not common, but the ER should be more aware of these things.
I wish Three Little Birds or similar was affiliated with hospital to offer the photos. Also because it was a holiday the bereavement nurse was not there and it would have been nice to talk to someone. I wish I kicked everyone else out of the room and just been me my husband and baby.
Wish they told me about donating breast milk and saving hair from my baby.
I wish I was able to hold my baby longer. I was told he would “defrost” if we held him longer then 30 minutes outside of the Cuddle Cot and then he had to stay cold for a few hours before we could hold him again. I wish I took more pictures of family visiting and holding my son.
Sought mental health counseling and support groups sooner
1. More support and therapy options. 2. If I could go back I would go to the hospital sooner, request through testing and get a new OB. 3. My regrets are not getting a better OB and not going to the hospital sooner.
I wish I had known about the support loss mom group Three Little Birds
Better access to postpartum support. Better anticipatory guidance on the induction process (this was my 1st pregnancy/birth experience)
Access to a Cuddle Cot
What was the highest cost you incurred in your perinatal loss experience?
$1200 for funeral
$1320 for an ultrasound that wasn’t necessary
Burial fees
Hospital bills
D&C surgeries, can't remember but probably four-figure expense
It was a mixture of medical bills and the 20% loss of wages for two months which led to having to was credit cards more to make up the difference.
My insurance deductible of $1,000
Honestly, the highest costs have been all the testing/additional monitoring with Maternal Fetal Medicine for my subsequent pregnancy.
My baby was diagnosed with a terminal condition in May, but was born in September. It was too emotionally hard to work constantly during this time, therefore, I lost income from lack of work.
If you could give advice to your care providers on how to support families and situations like yours, what would it be?
Be open to their desires as well as ready to educate on options.
More handouts as what was covered during that time is like a blur Just be there. Show up.
Encourage unlimited time with your baby.
To offer as many options as possible of things we do not know. I had never heard of a Cuddle Cot prior to and being able to have professional photos done was the best thing I ever did. My aunt suggested it, not the hospital.
Provide counseling or referrals
Offer more support and listen to patients more. If they have a concern look into it more
Info on more support groups
Just knowing the word "termination for medical reasons", where/how to find support. And that it’s always better to say acknowledge loss (even if you feel awkward) vs saying nothing at all.
There is a lot of support locally and online, but you don't know what you need when this happens to you. Providers need to TELL you all of your options, not wait for you to ask. I did not ask for a therapist, so it was not offered to me.
How did you learn about Three Little Birds?
My hospital offered their resources to me at the time of my loss – 6%
Three Little Birds met my family bedside at the time of my loss – 18%
A personal reference – 29%
Google/internet search – 41%
Facebook/Instagram – 6%
Any other thoughts or feelings about your experience or Three Little Birds you would like to share?
Three Little Birds is a resource that no parent should need. Babies aren't supposed to die, but they do, and when the worst thing you can ever imagine happens to you, having support from Three Little Birds is priceless!
Your group made me feel welcome and loved from the moment I met everyone. It was much needed during a time where my husband and I felt so lost. We cannot thank you enough for the opportunity to talk about our angels, remember them with tears but also laughter! The Craft and Heal events have given me items that I can hang around my house and remind me if my babies, the events have brought a lot of healing to my heart, helping me move forward while holding my angels close to my heart.
I am so grateful for this support group. They have held my hand through the darkest moment in my life and I’m forever grateful for them helping me see the light again. They are a safe space and people that feel like family now. It’s an instant connection with this group of strangers that we all feel and understand. It’s a wonderful, selfless program and life changing for sure. They gave me the greatest gift I could ever have, the most precious pictures of my beautiful son and I will cherish them forever.
You guys are the absolute best!!
Thank you for the support you have provided me this past year. Without this group I don't think I would be emotionally where I am today.
I just wish I had found y’all sooner in my journey!
Truly, Three Little Birds was my saving grace through my son's terminal diagnosis. They provided me with a ton of resources, encouraged me to create memories with our limited time, and was on call during my son's birth. The in person support group has been the only space I've felt seen and heard since my son's passing. It is a respite from this world that does not understand infant loss. I can not praise them enough.
THREE LITTLE BIRDS RESPONSE/CONCLUSION
While we know the results of this survey represents only a small portion of our overall registered membership, we know it does reflect the perinatal loss community at large. It is evident through our anonymous survey that while families may have a similar experience (stillbirth vs. neonatal loss, etc) they do not necessarily get to experience it the same way.
The Philadelphia/Southern New Jersey region represents diverse populations culturally, ethnically, religiously and personally. Additionally, the populations are diverse through income status and healthcare access and insurance coverage. Many families deliver at healthcare facilities in communities that are considered lower income and do not have the budgets or training available for providers to offer the specific options and considerations offered through a Bedside Bereavement Program like Three Little Birds offers. As we continue to welcome new families to the nest walking the journey of pregnancy and infant loss, we plan to focus our mission in 2024 to include:
Bedside Bereavement Program - We will continue to prioritize hospital requests from hospitals without established programs in the region to ensure these options are available to all loss families when volunteers from Three Little Birds are available. Read more here!
Perinatal Bereavement Training - We will continue to seek funding to provide our training program and support model to local hospitals that do not have training offerings and are looking to establish a Perinatal Bereavement Program with Three Little Birds. This includes an exciting upcoming new pilot program that will allow us to expand our training and support beyond the region! Read more here!
Legacy Project Program - We will continue to offer families a safe space to parent their baby through an ongoing project or annual event that raises awareness and funds to support our mission in perinatal bereavement. Read more here!
Ambassador Program - Our group of volunteers are working by County to help Three Little Birds expand our outreach and network with other perinatal professionals and birth workers. This group will also help us expand our Palliative Care Program. Read more here!
Pregnancy After Loss Mentorship Program - We offer our families walking the journey of pregnancy after loss a peer-led program that also provides access to birth doulas experienced in bereavement, lactation consultants, post-partum consultants. We also offer special events with Community Partners that encourage families to bond with both babies as they move forward and expand their families. Read more here!
Virtual and in-person support/Signature events - We will continue to find meaningful, fun and creative ways to connect our families that inspire and heal. This includes outside the box events like the Rage Room in PA and our Craft & Heals. Our Signature Events are meant to help #shatterthestigma of perinatal loss in the community and normalize that not everyone's journey to parenthood emulates what is seen on television or on social media.
THANK YOU FOR YOUR SUPPORT!
Unfortunately, there is very little funding for bereavement groups, specifically perinatal loss. We provide our services at no cost to the family, and we do not solicit them for donations. We rely on the generous support of the local community and local grand funding to support our mission. Tax deductible donations can be made directly to our fiscal sponsor, Federation of Neighborhood Centers Philly at the link here.
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