💜 Acknowledging the Incredible Work of the Butterfly Kisses Alliance 💜
We want to take a moment to recognize the amazing work the Butterfly Kisses Alliance is doing to support grieving parents across the US. Their dedication to ensuring a standardized level of care for bereaved families—before, during, and after loss—is truly inspiring.
At CuddleCot, we firmly believe that compassionate care shouldn’t end after death, and the Butterfly Kisses Alliance embodies this belief in everything they do. Their resources and support are invaluable for families navigating the hardest moments of their lives.
We spoke to the team at Butterfly Kisses Alliance about their passion for helping families, their mission, and the difference they’re making not only to moms, but to grandparents, siblings and dads too.
We encourage everyone to learn more about their vital work by visiting their website. Healthcare professionals, please consider signposting families to this incredible support network and following their socials for updates on their Perinatal Bereavement Standards of Care document.
Can you share the story behind the founding of your organisation and what inspired you to create it?
Butterfly Kisses Alliance was founded by four nurses who are very passionate about pregnancy and infant loss. While all of us are fortunate to not have experienced the loss of a baby ourselves, we have seen far too much throughout our careers. We have cared for families who have had miscarriages, stillbirth, terminal diagnosis, and infant loss. We have held the hands of women who are on their 5th, 6th, even 7th miscarriage. We have watched the father who just learned his baby is dead collapse in a heap on the floor, as if his soul just left his body. We have stood by while our friends and family suffer through infertility, and we have seen the devastation of families after a failed adoption. Time and time again, we have not only witnessed, but felt their gut-wrenching pain and agony.
We started Butterfly Kisses Alliance to honor every family and every baby we have encountered through loss. They are intertwined into our stories and into our hearts. We wanted to continue to provide support to families after they left the hospital. We wanted families to know that they are not alone. We remember too.
What are the core missions and goals of your organisation in supporting bereaved families?
Our mission is to provide education and support for families who have experienced pregnancy loss or the death of an infant. We believe that by offering resources and guidance, we can help families navigate the difficult journey of grief and find hope for the future.
Our goals are to:
- provide support for families experiencing pregnancy and infant loss
- raise awareness of the uniqueness of perinatal loss
- provide education to healthcare providers who care for these families.
Could you highlight some of the most impactful programs and services you offer to families experiencing baby loss?
We provide comfort kits to families upon request. The comfort kits contain a journal, books for mothers and fathers, grief affirmation cards, a memorial candle, and self-care items, because too often, grieving families forget to take care of themselves.
We recently held a Butterfly Memorial Walk and were able to provide families with stuffed animals customized to the birth weight of their baby. It was truly a touching moment to see all these men and women walking around hugging stuffed animals. The feedback that we received was incredible. We hope to make this available to more families in the future.
What specific support do you provide for siblings, grandparents, dads, and the extended family who are also affected by the loss?
Comfort kits can be requested by mothers, fathers, or both. When something is requested for male partners, we include a grief book for dads as well as an informational brochure. We also have brochures for siblings and grandparents. When families request, we include something in the comfort kits for siblings as well.
What have been some of your most significant achievements or milestones since the charity’s inception?
We have been able to send comfort kits to nearly all but a few states in the United States and at least three other countries.
We are excited to be able to provide resources to areas that encounter women experiencing early pregnancy loss such as in-office providers, emergency departments, surgical units, and infusion centers. We want to make sure that all facilities and departments have access to support resources for these often overlooked women.
How do you ensure that your support services are accessible and effective for all bereaved parents?
We have a website that offers our family resources for free. Patient resource materials, such as brochures and booklets, can be very expensive. Anyone can access these at any time. Families can access these directly, or healthcare providers can print PDFs from our website to give to patients and their families.
We also share information on our social media platforms such as Facebook and Instagram so that we can reach more families.
Can you discuss any recent projects or initiatives your charity is working on to further support families?
We are currently in the final stages of publishing a Perinatal Bereavement Standards of Care document. In nearly all areas of healthcare, there are established standards of care, except perinatal bereavement. A document of this type will help guide nurses, physicians, ultrasound technicians, etc. in caring for families who are experiencing loss. There is never a more important time to get it right!
We are working on developing our parent advisory committee to help guide and develop our programs. We want the voices of people who have experienced pregnancy and infant loss to guide our practice. The parent advisory committee would also be responsible for developing some local social events for families who have experienced loss.
·What are your future plans and visions for the charity over the next five years?
- As previously mentioned, we would like to find a way to make weighted stuffed animals available to more families.
- We would like to begin offering perinatal bereavement educational courses for healthcare providers who care for families that experience loss.
- We would like to develop some local and online support groups for our families. We have discussed hosting a sibling camp in the next couple of years.
How can individuals and communities get involved in supporting your charity and its mission?
There are a couple of ways that individuals can get involved.
- Request a comfort kit for someone who has experienced loss
- Share and follow our social media pages
- Request brochures if you are a healthcare professional
- Consider sponsoring a comfort kit
- Donate or participate in our fundraisers
· Can you share a particular story or testimonial from a family who has been positively impacted by your charity’s work?
This is from a family that left the hospital, literally, with empty arms. She was not provided with any keepsakes or mementos and was only able to find her son’s weight and length by accident in her medical chart.
“ We are profoundly grateful for the beautiful care package you sent. The birth certificate for our dear Harrison touched us deeply, as it was a keepsake we had not received before, alongside any record of his height or weight. Including a book specifically for grieving fathers was a thoughtful and meaningful gesture, acknowledging the often overlooked sorrow of a father’s heart. Thank you for recognizing this.”
“We are eager to plant the flowers and use the lotions you provided, which we see as acts of healing and remembrance. Your thoughtfulness in crafting this surprise has brought us unexpected comfort during this sorrowful time.”
“Your organization’s empathy and support shine brightly, offering solace to grieving hearts like ours. We are immensely thankful for your kindness and the loving spirit of your mission.”
To learn more about the incredible resources available to families and healthcare professionals visit: butterflykissesalliance.org