Caring for a Child with Serious Illness: The Shu Family’s Palliative Care Story

Welcoming your first child into the world is truly a life-changing moment for anyone. For Dannell and Peter Shu, it was beyond anything they ever imagined.

Their newborn son Levi was born with brain damage.

“When Levi was born, he was born without a heartbeat or a breath. He didn’t move and he didn’t cry,” recalled Dannell Shu, Levi’s mother. “And it was in that moment that we changed course.”

Dannell and Peter knew that they and their newborn son needed immediate and lasting support. They began pediatric palliative care soon after Levi’s birth.

Pediatric palliative care is specialized medical care that focuses on providing relief from the symptoms, pain and stress of a serious illness—whatever the diagnosis. The goal is to improve the quality of life for both the patient and the family.

Dannell was immediately struck by the ways in which the palliative care team adapted to Levi’s specific behaviors and challenges. “One of the ways the palliative care team helped us in the first couple hours, and couple days, was to be the example,” Dannell remembered. “They were peaceful and comfortable and willing to slow down.”

Levi Shu is one of nearly 14% of US children ages 0-17 have special health care needs, according to the National Hospice and Palliative Care Organization. For families like the Shu’s, pediatric palliative care not only helps control the symptoms of the child’s illness, but it helps the family to understand all of the treatment goals and options. Because of the complex nature of his health needs, Levi has over fifteen doctors and specialists on his medical team. The Shu family’s palliative care team served as a critical link in bringing the varying recommendations and opinions for his care together.

The Shu family’s palliative care team became their lifeline. “Our palliative care team was the first call that we made in regards to Levi’s needs,” Dannell noted. “Everything from ‘Something’s really going wrong and we don’t understand it,’ to ‘I think I just gave him the last dose of a medication that he’s going to need again in six hours. How do I get a refill?’”

In addition to coordinating his care and providing the Shu family with financial and social resources, the palliative care team also worked to ensure that Levi’s quality of life was at the center of his care.

“His family was very clear that this was about Levi’s quality of life, that palliative care means living fully and joyfully to the best of his abilities, and that’s what we do in pediatric palliative care,” said Jody Chrastek, a nurse on the Shu family’s palliative care team.

For Dannell and Peter, that meant allowing Levi to experience joy and explore the world around him as much as possible. For example, when a music therapy group was introduced into his care, Levi delighted in it. “They just brought so much light into his life,” recalled Nurse Jody Chrastek. “It was fun to see him react and be aware.”

Dannell Shu hopes that Levi can serve as an inspiration to all families with seriously ill children.

“My child should be a poster child. He’s happy and has a quality of life that is far beyond anything anybody’s ever imagined for him because the palliative care team has been involved with him, with us as a family and with us as parents,” she explained. “I’m a huge advocate for palliative care, particularly for pediatrics. Our lives have been transformed.”