‘He wished that every kid had a place like that’: Mother fights for pediatric hospice care after son’s battle with rare illness

By Amanda Rooker

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    DES MOINES, Iowa (KCCI) — Shanna Sieck’s mission is a deeply personal one — one she never imagined having to take on. After losing her son Mason to a terminal illness, Sieck is determined to ensure no other family in Iowa has to leave their support system behind to get the care their child needs.

Mason Sieck, a vibrant 7-year-old from Grinnell, was diagnosed at just two years old with Gardner’s Syndrome. The rare genetic disorder caused dozens of cancerous tumors to form throughout his body.

After exhausting treatment options, doctors told the Sieck family that there was nothing more they could do. Mason’s condition was terminal, and he was put on hospice care.

Shanna Sieck said she quickly realized that Iowa had limited options for pediatric end-of-life care. Iowa only offers in-home or hospital hospice services, neither of which were suitable for Mason nor his family’s needs.

“We didn’t have the ability to control his pain,” Sieck said. “We weren’t the caregivers like nurses and doctors that we really needed to properly care for him.”

In search of a solution, Sieck made the difficult decision to relocate her family five hours away to a pediatric hospice home in Minnesota. The move, though emotionally and logistically difficult, brought comfort to Mason, who thrived in the specialized environment.

“Mason would wake up every morning and say, ‘Mommy, I love it here,’” Sieck said. “He told us that he wished every child had a place like that if they needed it.”

Now, after losing her son, Sieck has made it her mission to ensure that no other family in Iowa has to experience the same heartache. She’s made weekly trips to the Iowa Statehouse to share Mason’s story and advocate for change.

Her efforts have led to the introduction of House File 933, a bill that would pave the way for pediatric hospice homes in Iowa.

“We just don’t want other families to have to be away from their whole support system to get the care they need for their child,” Sieck said.

The bill, which already passed the Iowa House with unanimous support, is now making its way through the state Senate. If passed, it would create a new category in state code. That would allow for the establishment of licensed pediatric hospice homes that provide specialized care outside of a hospital setting.

These homes would offer essential services such as medical care, occupational therapy, grief and bereavement support, memory-making opportunities, relief for caregivers, care coordination, pain management and resources for families.

“This bill would allow approximately 9,028 medically fragile children in the state of Iowa pediatric palliative care,” Sieck said during a Senate subcommittee hearing on the bill Wednesday. “These children are not expected to live to their 21st birthdays.”

Sieck told lawmakers that the centers would also fill a needed gap in support for the families of medically fragile children.

“Divorce rates are higher amongst families with medically complex children, and a pediatric palliative care center support … would help take away some of the stressors at home and the financial burdens,” she said.

Sen. Kara Warme, R-Ames, who signed off on the bill, talked about the importance of offering families options when it comes to end-of-life care for their children.

“Some families may not want a child with a terminal illness to die at home because of what that might mean for the memories for siblings and others in the family,” Warme said. “I like the thought of something new that has worked elsewhere.”

Sieck’s vision goes beyond just passing this bill in Iowa. She wants to open Mason’s Light House, the country’s fourth pediatric hospice home, in honor of her son. Sieck has already raised more than $140,000 toward the project, but the bill must be signed into law before her dream can become a reality.

“If we could just pass this and be the starters of this bill, so many kids and families could be really affected and helped,” Sieck said.

The passing of the bill in Iowa could serve as a model for other states, as more than 40 pediatric hospice homes are working to emerge across the country.

The proposal is now heading to the Senate Health and Human Services Committee. Friday is the second funnel deadline, which means most bills have to pass through a floor vote in one chamber and committee in the other chamber to stay eligible for the rest of session.

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