Apr 2, 2021
Brenda Agnew and Jan Marin, are co-hosting today’s episode, and they are joined by Fabiana Bacchini, executive director of the Canadian Premature Babies Foundation.
Fabiana is the Executive Director of the Canadian Premature Babies Foundation, a journalist and the published author of From Surviving to Thriving, a Mother’s Journey Through Infertility, Loss and Miracles. While in the NICU with her surviving twin, born extremely preterm, she participated in the study of Family Integrated Care (FICare). This led her to extensive volunteering in the NICU at Mount Sinai Hospital and to become an ambassador for FICare, travelling across Canada and internationally to share her experience with this model of care.
Her son was diagnosed with cerebral palsy which continued to empower her to be a strong voice and advocate for premature babies and their families. Currently, Fabiana serves as an advisor on the National Steering Committee for FICare, the Critical Care Services Ontario (ONICAC group), Child-Bright Network, Cultivating Change Committee at the Sinai Health System and The Change Foundation Caregiver Project. She also sits on the CIHR Institute Advisory Board of the Institute of Human Development, Child and Youth Health. She is a member of the founding committee of Global Alliance for Newborn Care, (GLANCE).
Key Takeaways:
[2:14] Fabiana shares about her story and how she got involved with the Canadian Premature Babies Foundation.
[6:05] Fabiana talks about the study in ICUs all around Canada that she got the chance to participate in, and how that program was impacted by COVID.
[9:30] Brenda talks about her experience and the loneliness she experienced.
[14:33] How do families find out about the Canadian Premature Babies Foundation if they are not googling it?
[17:17] Jan shares how she became involved with the Canadian Premature Babies Foundation.
[18:56] Fabiana shares how she got involved with the foundation.
[24:10] How does Fabiana find the balance between allowing families to keep hope while their babies are in NICU and at the same time, talk to parents realistically about the possible outcomes for the future?
[29:50] There is a full spectrum of possibilities when a baby enters the NICU.
[33:38] Brenda talks about the way doctors deliver a diagnosis.
[36:21] The aim is to challenge the values of how disability is perceived.
[43:28] Peer support is absolutely crucial.
[48:28] What ifs happen.
[51:20] “If there isn’t a seat for you at the table, then bring your own folding chair.”
Mentioned in this episode:
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