Keisha’s Story and New Hope:
Perinatal IMPACT and Legacy Work
Keisha and Alex were looking forward to having their first child, a baby girl. During the first trimester, however, a diagnosis of a genetic condition and a high-risk pregnancy changed the course of their plans and dreams.
They were introduced to the Infant Maternal Perinatal Advanced Care Team (IMPACT) and learned – what was ahead for them, for their pregnancy, and the short life expectancy of their daughter.
IMPACT (a collaborative program from Emily’s House children’s hospice, SickKids Hospital, and Mount Sinai Hospital teams) is available to parents and families who experience a life-threatening diagnosis for their baby during pregnancy. As families are confronted with a number of sensitive and difficult decisions surrounding the life of their unborn child, IMPACT will gently accompany the family from the earliest moment of diagnosis in the hope of creating a lasting narrative for the baby’s life.
Even though Keisha and Alex were in the early shock of just starting to process this new direction their lives were taking, they felt supported by this incredibly caring and compassionate team.
Then, on an autumn weekend, Keisha stopped feeling her baby kicking in her belly….
When Keisha didn’t feel the baby moving anymore, they went for a medical appointment and discovered that their baby had passed in her womb. They were given the option to deliver that day, or to come back in a few days for a scheduled delivery. These parents were distraught and needed time together at home to process. Keisha says the few days were “something of a gift,” that helped them prepare … as much as anyone can for something like this.
Together, these young parents took some time to work through the resource materials and IMPACT Memory Kit, designed to assist parents on this journey. One activity included two pieces of cloth for making hug scarves. Husband and wife made hug scarfs with their arms: tracing mom’s arm on one side of the scarf material, and dad’s arm on the other side of the scarf. They took the finished scarf with them when they returned to the hospital for their scheduled delivery. The nurses traced their baby’s arms in the other, smaller piece of cloth to create a small baby hug, that the parents were able to take home with them. They keep the baby’s hug to today in a bassinet. The hug made with the outline of the parents’ arms was incorporated in a celebration of life ceremony for their baby girl. This is one way they could express: “Love you forever.”
At an intimate service, they incorporated a second activity. They started with a painting of a tree trunk and branches, and each person in this loving circle took a turn dipping their finger in paint and pressing their thumb onto the canvas to paint leaves on the Tree of Love. Everyone who participated was deeply moved by this communal art experience, and by being able to help the grieving parents to preserve a keepsake memory of this treasured child. Words can’t do justice to their experience but there was something sacred in this shared art, and something beautiful that they could hold onto.
In the year following, psycho-social supports continued as the care team reached out on milestones dates like Mother’s Day and Father’s Day, and on meaningful memorial dates to encourage the well-being of this family. On one follow-up with Keisha during the first trimester of her next pregnancy, she was anxiously awaiting medical test results, while wondering if she “could even have a healthy pregnancy.” Later, we celebrated the baby’s developmental milestones.
When we last reached out to her, she was still “in awe” of her newborn son, and appreciative of everything. She shared: “It’s so great to see him grow … and breathe.”