Pediatric hospice care brings comfort to parents and babies

June 01, 2016

Just 15 weeks into Megan Wahl’s pregnancy, she and her husband Ben found out their daughter Grace had a rare DNA abnormality called trisomy 18, also known as Edward’s syndrome.

“Most babies with this condition don’t survive birth and if they do, most don’t live long,” explains Ben.

Their radiologist referred the couple to Providence Hospice of Seattle’s Stepping Stones Pediatric Program for newborn babies with a life-limiting illness. Stepping Stones offers support to mothers and families during and after pregnancy.

Grace was born on Feb. 12, 2015, and she survived. She was born with two holes in her heart, digestive problems, low muscle tone and slower brain development.

Easing a family’s way from hospital to home

Thankful their little girl was alive, the Wahls brought her home and Stepping Stones was there to support them.

“Hospice helps us in countless ways,” says Ben. “Grace’s health can change quickly and when problems come up, and we’re not sure what to do, they’re always there to help. They coordinate with Grace’s doctors. We can call hospice for anything. To have that comfort when unexpected things happen is incredible.”

“The fact that the hospice team comes to our home is amazing and helpful beyond words. We couldn’t believe all the supplies they provide and that they’re sent right to our home. Without hospice, our life would be much harder than it already is. Grace would probably spend more time in the hospital and at doctors’ offices. Life would be a lot more stressful.”

A new outlook on life

“Grace is so unique and so special. She’s brought so much perspective to our lives. She’s taught us about what to appreciate in life and what’s truly important. And we’re so lucky to have the hospice team around us. They do more than just take care of Grace. "They genuinely love her," said Ben.