Memories of a Gentle Presence
The Memories of a Gentle Presence Palliative and Bereavement Care Program is eternally
grateful to OTIP and the sponsors of the Annual Charity Golf Classic for their continued
generous support. The program was established almost 20 years ago to ensure that
every family had access to information and support after they experienced the death
of their baby. Since that time, it has been recognized that not all babies die immediately
after intensive life support is withdrawn, and so the support for families awaiting
death is also provided (palliative care).
Accomplishments of this program are numerous but include renovation of our Care
By Parent/Bereavement Room for families facing crisis and the death of their newborn
baby. This room is a space that provides privacy, comforts similar to home, and
a place to spend time with their baby, sometimes while still receiving life-sustaining
medical therapy. This is a necessary part of a family’s grief experience,
and the room helps parents feel like families, not visitors.
Since 1994, there have been more than 2,500 families supported during the hospital
experience of their infants’ death, and in the months and years after their
baby has died. Support has included legacy creation (photos with baby, siblings,
parents and extended family and friends, ink prints of hands and feet, plaster molds,
and the list goes on), information sharing (booklets and lending library), parent
support (contact throughout first few years, including phone, e-mail, newsletters,
visits at home or hospital), Annual Remembrance Gatherings (attended by 120-150
participants) for families and friends and advocacy for families needing assistance.
Referrals for counselling and community support organizations are also a large part
of the service provided.
As well, the Palliative Care and Bereavement Coordinator, a nurse, provides ongoing
staff and other health care professional education at Sick Kids and externally to
other hospitals and volunteer groups who may be interacting with bereaved families.
She sits on the Board of Directors at Perinatal Bereavement Services Ontario (www.pbso.ca) to advocate
for the needs of bereaved parents whose babies have died. Education includes courses
on communication and caring, presentations to various groups interested in this
program, role-modelling for other hospitals interested in taking on this type of
program, and RTS Perinatal Bereavement Support Training courses, run in conjunction
with PBSO. All of these are possible because of the donated funds from the OTIP
Annual Charity Golf Classic and may not happen otherwise.
Families are so appreciative when they hear that OTIP is funding this program, especially
those who are teachers or members of the Ontario education affiliates.
On behalf of the staff, families and babies, thank you to OTIP, the sponsors and
the golfers for their continued support!
Lori A. Ives-Baine, Reg.N., B.Sc.N.
Palliative Care and Bereavement Coordinator
Neonatology Program
SickKids Foundation
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