Recognizing Lori Ives-Baine, the nurse who guides patients’ families through their grief

Meet Lori

“I’m so sorry you have to meet me.”

This is the line Lori Ives-Baine uses when she introduces herself to patients’ families. She refers to herself as one of the scariest people you could ever have to meet.

It might be hard to believe anyone could use the word “scary” to refer to the woman dressed in bright pink, whose hair is pink, purple and blue with glitter in it.

Her warm and bright appearance is intentional — as Grief Support Coordinator, it’s Ives-Baine’s mission to make one of the worst things that can happen to a family just a little bit easier. At The Hospital for Sick Children (SickKids), Ives-Baine is there when families are preparing for, experiencing and grieving the loss of a child.

“It’s about adding life to a patient’s time here when we can’t add time to their life,” says Ives-Baine. “I can make a difference when I can’t change the outcome.”

On Pregnancy and Infant Loss Awareness Day, we honour those we have lost, and recognize Ives-Baine and her team at SickKids’ Pathways Grief Support Program for the many ways they help parents and families manage their grief.

An estimated one in four pregnancies end in a loss. And yet pregnancy loss is a stigmatized topic that many are afraid to talk about. A parent’s loss of their child, whether before birth or at any stage of life, brings a unique grief journey that lasts a lifetime. Pathways and the Paediatric Advanced Care Team (PACT) at SickKids have set out to start a conversation and raise awareness about the importance of remembering every moment, big and small.

The program has grown over the last decade. Before Pathways had a name and a team behind it, grief support was just one part of PACT. Ives-Baine realized there was more she could be doing to support families, not just right when they’re experiencing a loss, but leading up to it and for years afterward.

Ives-Baine is a nurse who started at SickKids almost 33 years ago. In her time here so far, she has touched many lives and aided so many families through some of their toughest moments. She remembers everyone she meets to the tiniest detail, and she keeps in touch “for as long as they need,” she says. For some families, this has meant more than a decade.

Matthew’s story

From Bruno and Marlene Geremia

Ives-Baine first met the Geremias in the fall of 1996, when Matthew was born three months premature. He spent more than four months in the Neonatal Intensive Care Unit (NICU) at SickKids before going home. During his stay, Ives-Baine was his nurse. That’s where their bond began.

Matthew, a happy-go-lucky boy who loved Frank Sinatra, lived to be 18 years old. He had many health challenges over the course of his life and spent a lot of time moving between hospitals. Ives-Baine stayed in contact with the family over the years, until he returned to SickKids in 2013, where Ives-Baine was his nurse once again. “It came full circle,” says Matthew’s mother, Marlene.

Over the next year, he spent a couple more stays at SickKids before moving to Emily’s House, a Toronto hospice for children, for his final months of life. Through every happy moment and every tough day, Ives-Baine was there. When he died at Emily’s House in 2015, Ives-Baine attended Matthew’s funeral.

The Geremias have become familiar faces at events where they share Matthew’s story and connect with other families grieving their children. These events, hosted by Lori and her team, are anything from candlelight ceremonies to Zoom yoga classes and craft sessions. These events provide a community where families can share in their grief, and, perhaps most importantly, to say their child’s name.

“Parents’ worst fear is having their child forgotten,” says Matthew’s father, Bruno. He is a big believer in the power of these community events. “These are things that keep your child there with you in the present.”

Legacy building

In addition to community events, Ives-Baine’s team provides a number of other beautiful services that aim to celebrate a child’s life. This includes Bravery Beads, which are beads on a ribbon that each commemorate a milestone in a child’s stay at SickKids, handprints and footprints, and clay moulds of hands and feet.

The PACT team has provided carts on almost every unit of the hospital to allow these materials to be easily accessed to make memories. Ives-Baine says it’s important to her that staff can teach families to use these materials on their own and empower them to create memories together.

Compassionate photography

Another service SickKids offers families with children in palliative care is an opportunity for family portraits. Medical Photographer Dodge Baena takes photos across the hospital, from clinical photography to portraits. With the PACT team, Baena captures moments with families near the end of a child’s life.

The emotions in these photos are immediately clear. Images show parents hugging their child to their chest, siblings holding their hand, family members playing guitar while the child looks on. Entering this kind of vulnerable setting is no easy feat, but Baena has learned the key is to have a calm presence and let the moments come together. “The PACT team makes it easy for me,” says Baena. “It’s nice because we work really well together.”

For these photoshoots, the families are aware that a photographer is coming, and Baena can calmly introduce himself knowing everyone was expecting him. From there, he lets the session follow its own path. With his silent shutter (“this is the most important part,” according to Baena) his camera soundlessly takes photos and videos, creating memories the family can hold onto.

For Ives-Baine, the most important part of her job is the opportunity for her to teach, but also to learn from families. Through the program, her team listens to families and encourages them to grieve in whatever way feels right for them. And most of all, they are there as an additional layer of support.

“Our greatest gift is our ability to just be there and to listen,” says Ives-Baine.