Hope in Action is a series to highlight the aspects of our volunteer work. Advocacy for a child, whether in child welfare, juvenile justice, or truancy systems, covers several activities from court hearings to visits with a child to conversations with parents. Each month, we share a story of small (or big!) moments from one of our cases that exemplify what advocacy can mean to children and their families.

An Infant in Medical Crisis

During the first few months of her life, Harper* required multiple hospital visits and stays due to her complex medical needs from DiGeorge syndrome. Harper’s parents were young—just teenagers—and struggled to manage her care.

DiGeorge is a genetic condition caused by a missing piece of chromosome 22. The syndrome affects multiple body systems, leading to heart defects, immune system deficiencies, developmental delays, and distinctive facial features. Infants with DiGeorge syndrome require specialized medical care to ensure their well-being.

As a result of missed medications and feedings, Harper wasn’t thriving and was often hospitalized due to failure to thrive. Her inexperienced parents often slept through her crying at night and forgot to bring her to follow-up doctor visits for monitoring. Harper lost weight while at home but would gain weight quickly during her hospital stays. Child Protective Services became involved due to allegations of medical neglect.

The Right Advocate for Harper

Though all Advocates play a vital role in ensuring vulnerable children receive the care they need, Harper required an Advocate with specialized medical knowledge to navigate her complex health challenges. Child Advocates asked volunteer Advocate Chelsea*, a physician assistant who often saw pediatric patients at her family care practice, to take Harper’s case. She became an invaluable support for Harper, her parents, foster parents, and case professionals.

Chelsea helped everyone involved in the case understand the importance of medication schedules, doctor visits, and proper nutrition.

“I was able to communicate just how fragile she was, especially after multiple heart surgeries and hospital stays,” Chelsea said. “I helped everyone understand the seriousness of her condition and that her caregivers needed to be compliant with medications, feedings, and doctor visits. If a child with DiGeorge doesn’t receive the appropriate caloric intake, it can affect their life span.”

Her medical background also allowed her to translate complex information into everyday terms, ensuring caregivers felt confident in handling Harper’s care.

Ensuring Continuity in Medical Care

Harper lived in two foster homes, both providing incredible support. Her first foster mother, a nurse, managed her medical needs well, but after an open-heart surgery, Harper’s condition became more delicate and she could no longer meet her medical needs. Her second foster mother, also a nurse, saved Harper’s life twice by resuscitating her when she stopped breathing.

Because of Chelsea’s involvement with the case from the beginning, she was able to advocate for medical continuity when Harper moved foster homes, emphasizing the importance of Harper remaining under the care of her original specialists rather than switching to new providers. The new foster parents drove more than an hour on a regular basis so that Harper’s medical team could continue to treat her.

While at her second foster home, Harper needed another open-heart surgery. Knowing the complications Harper experienced with the G-tube feedings after her first surgery, Chelsea worked with the foster family and medical team to adjust her feeding schedule after surgery, preventing further complications.

“She’d had a lot of setbacks after her first surgery due to GI bleeding because food was given too quickly—it extended her hospital stay,” Chelsea said. “Before her second surgery, I talked with her medical providers and let them know her stomach had a hard time feeding quickly. Because I was able to communicate this and the team made adjustments to support her, she didn’t have GI issues again.”

Advocacy for Parents

In addition to her incredible medical advocacy, Chelsea also worked to engage the parents in completing their services and establishing a home that could support Harper’s medical needs.

“Harper’s parents had no support from their families, despite their age,” Chelsea said. “I was impressed with Judge [Amy] Tucker’s compassion for these young parents and her ability to speak firmly but lovingly to them. It’s sad seeing the generational trauma that continues the cycle of neglect.”

Though her biological parents were unable to meet her complex medical needs and provide a safe home, Chelsea supported and encouraged them to make changes for not only their child but for their own futures as well. The parents ultimately decided to relinquish their parental rights while Harper was living with the first foster family. Chelsea helped them see that their decision was an act of love.

“This [relinquishment] was the hardest thing they’d ever experienced, but sometimes the hard thing is the right thing,” Chelsea said. “I was able to speak a little bit of hope for their future as well as Harper’s. I shared with them that they were showing love by putting her in the hands of someone who can adequately care for her. You hope that these small seeds of encouragement can transpire into something positive.”

Simple Actions, Lasting Impact

After her second surgery, Harper’s second foster family wanted to adopt her, knowing they could provide the lifelong care and love she needed.

Chelsea served as Harper’s Advocate for two-and-a-half years until she was adopted. The prognosis for children with DiGeorge syndrome is different for each child. With proper medical care and interventions, she has the potential to thrive.

Looking back, Chelsea said she is grateful her tools and skills as a PA positively impacted Harper’s life and her advocacy.

“Even small efforts can make a big difference over time in a child’s life,” she said. “I was an extra set of eyes and ears for a kid, and because she had an Advocate, Harper had her best chance at a longer, happier life with a loving family who understood her needs.”

*Names changed for privacy