Local Mom Champions Care for Seriously Ill Children

GIPPCC Celebrates Governor Pritzker's Signing of Pediatric Palliative Care Act

Honors Passionate Advocate Mimi Noonan

The Greater Illinois Pediatric Palliative Care Coalition will celebrate the passage of SB2384 on September 27, 2021 from 6-7pm at Jaycee Memorial Park in Deerfield, Illinois. This new legislation, signed into law by Governor Pritzker on August 27, 2021, adds pediatric palliative care for Medicaid beneficiaries under the age of 21. This programming is a monumental step towards better healthcare for seriously ill children and their families.

Senator Laura Fine (D, 9th District); Senator Julie Morrison (D, 29th District); and Representative Robyn Gabel (D, 18th District) are all scheduled to attend the outdoor celebration. Each helped champion the bill through the legislature.

"We extend our gratitude to each of these legislators for their support and leadership in securing the appropriate care and resources for seriously ill children and their families within the state of Illinois.," said GIPPCC Executive Director Kristin James.

Additionally, the event will also honor Deerfield resident Mimi Noonan who is a passionate and compelling advocate for palliative pediatric care and serves as president of GIPPCC's board of directors.

An Endless Apology

Mimi's first-hand knowledge of the value of pediatric palliative care drives her. In 2003 her daughter Tierney was born with Trisomy 18. As a result of her chromosomal anomaly Tierney had complex developmental issues and was medically fragile from birth. Ninety percent of children with Tierney's diagnosis do not survive their first year.

During a meeting with doctors when Tierney was just a few days old. Mimi was directed toward palliative care. As a result of this early referral, Tierney received primarily home-based care by an interdisciplinary team in partnership with doctors at the Ann and Robert H. Lurie Children's Hospital in Chicago. Caregivers came to the family home to address each medical, developmental and family issue that arose.

Tierney survived for almost three full years. According to her mother, she enjoyed a wonderful quality of life, reached many milestones, and spent less than one week of her life in the hospital. Tierney died at home, comfortably and peacefully.

"She was surrounded by her brothers and in her favorite rocking chair; I could feel the support of her care team, I understood and was prepared for changes in her condition and was able to fully focus on loving her. As gut-wrenching as it was to lose her, my memory of this moment is of Tierney's sweet face, free of any distress, and the kisses her brothers gave her, over and over. There is solace and beauty in that memory and I will always be indebted to her care team for Tierney's peaceful death, "said Mimi.

This experience alone would have been enough to turn anyone into an advocate for pediatric palliative care, but Mimi's children's story did not end there. During the same time period, her son Keegan was diagnosed with leukemia.

Keegan's care was entirely focused on a cure. At 6 years old, he began a relentless and difficult chemotherapy and radiation protocol that was to last for 3 years.

Keegan's cancer was as ruthless as the therapy to combat it; he relapsed twice during the protocol. It relapsed in full fruition 8 weeks after Tierney's death, and a stem cell transplant was planned. When the option of palliative care was suggested by Mimi, the doctors appeared incredulous at her concern and reiterated confidence in Keegan's recovery.

"This pattern continued for the final five, unspeakably difficult days of Keegan's life. It has been 15 years since his death, but I could recount for you today every searing moment of his pain. It was not until the last few hours of his life that a palliative care team was consulted and was able to provide comfort to his final moments."

"That day marked the beginning of my advocacy for children with life limiting illnesses. The struggle at the end of Keegan's life stands in stark contrast to Tierney's peaceful passing. Keegan's suffering has stayed with me, and my work with GIPPCC is an endless apology to him and any sick child engaged in a life and death battle who does not have the comfort and care of a palliative care team," said Mimi.

Significant improvements and a tremendous need:

The newly created programming recognizes the unique needs of children with serious illnesses and their families. This includes:

• Receiving home-based nursing and psychosocial supportive care from the time of diagnosis

• Honoring family goals of care with the focus on optimizing quality of life

• Respecting the unique trajectory of each child's condition and the care for each family

• Acknowledging the need for children and families to experience fluid transitions between hospital and home

While the death of a child is unimaginable, for over 2,500 families a year in Illinois, it is a reality. While the pediatric death rate is declining, the overall prevalence of children with serious illness is increasing. The reality is:

• Over 2,800 children in Illinois currently live with a serious illness.

• Another 1,200 Illinois children are newly diagnosed every year

• 89% of parents continue to report that their child suffered a great deal at the end of life

• 49% died in the hospital, even though most parents voice a desire to be at home

• Less than 1% of children who could benefit from Pediatric Palliative Care receive it

• Illinois continues to rank in the bottom tier nationally for access to pediatric hospice care

Next steps in Illinois will include expansion of training programs for pediatric palliative care to ensure that children, regardless of their location within the state, have access to this extraordinary programming that improves quality of life for seriously ill children and saves money by shifting costly inpatient care to more coordinated and less expensive home-based care.

For more information about pediatric palliative care in Illinois and stories about the impact of these services in the lives of children and their families, please visit gippcc.org.

Jaycee Memorial Park is at 1026 Wilmot Road in Deerfield. The event is open to the public. Questions should be directed to Kristin James at (844) 944-7722 or kjames@gippcc.org.