A Better Life: Highlights
After being born with a host of previously undetected birth defects, Zoë Bee was expected to live about a year. Through Children's Pain and Palliative Care Program, Zoë Bee was able to live at home with her family and flourish during her short but remarkable five-and-a-half years of life. View the video above to learn more about Zoë Bee's experience or read the full story.
- "Together, in unison and in harmony, as partners and parents we decided whatever life this little girl has, it's going to be home and not the hospital and then with the support of some very close doctors, we were able to keep her home," says Sally Spector, Zoë Bee's mother.
- "My husband and I both believe that Zoë would've died much earlier if she had not been on a palliative care plan. We believe that an aggressive medical approach for a child with her particular constellation of symptoms and conditions, she would have probably acquired some kind of infection and, or a complication. She was very slow to heal, very easy to get sick. We really believe that being cared for at home through Children's kept her alive, as long as she was alive," she says.
A Better Life: The Full Story
Helping children stay at home through palliative care
Sally Spector had a nagging premonition that something was wrong with her third pregnancy. Sadly, she was right. Sally's daughter, Zoë Bee, was born with a host of previously undetected health challenges, the result of a rare genetic abnormality that caused numerous birth defects and a weakened immune system.
"By six weeks, she'd had heart surgery, a tracheostomy, abdominal surgery and was diagnosed with a severe seizure disorder," says Sally. "Everyone's best guess was that she would live about a year."
Reaching out to Children's
Sally and her husband, Alex Makovetsky, decided that they wanted their daughter home with them for whatever the future held. With the help of the Pain and Palliative Care Program at Children's Hospitals and Clinics of Minnesota and the support of family, doctors and caregivers, they brought Zoë Bee home. What followed was a courageous path of extraordinary care and unconditional love that surrounded Zoë Bee throughout her short, but remarkable, five-and-a-half years of life.
Palliative care helps chronically ill children with aggressive, life-limiting symptoms live as long and as well as possible. "When I first met Zoë Bee, it was clear we could ease her suffering with home-based palliative care," says Kaci Osenga, MD, assistant director of the Pain and Palliative Care Program. "At Children's, we have the largest program in the country and support families in managing the daily needs of these children."
A plan in place
Working with Children's, Zoë Bee's parents confirmed a regimen of medical procedures and specific orders to follow so that they knew exactly what to do when she fell sick. In the event that it became clear that Zoë Bee was dying, their decisions were made in advance so that they would be able to focus exclusively on their daughter.
"We validated for Sally and Alex that they were making absolutely sound, loving decisions for Zoë Bee, and in fact, we saw Zoë Bee flourish in life during that time," says Dr. Osenga.
A life of her own
Zoë Bee made extraordinary progress, learning sign language, walking, riding a tricycle and boarding a school bus – important milestones that seemed unimaginable, given her diagnosis. With regular visits from the Children's medical team and a nurturing staff to provide home-based palliative care, Zoë Bee was able to be at home with her family, to remain as healthy as possible and to live well for as long as she could.
When the end neared, Zoë Bee was hospitalized for only the third time in her life. Cradled in her parents arms, pain free, she quietly drifted into a gentle and peaceful death.
"As a parent of a child with a life-threatening condition, you learn to accept that you may lose your child," says Sally. "It mattered profoundly to her dad and me that her death be sacred and Children's helped us with that. When the end came, I didn't have to make any of the medical decisions about what to do. I just got to be her mom."