When Donisha heard that her newborn daughter, Emora, required immediate medical intervention to survive, her whole world changed in an instant
The day she was born, Emora was diagnosed with a genetic condition that affected her brain function. Donisha was shocked when doctors told her that Emora needed to stay in NICU (Neonatal Intensive Care Unit) to receive specialized care—including medical tests and surgery—if she were to survive her diagnosis. The prospect was devastating. But, due to a strong and determined spirit, Donisha was prepared to fight for her daughter from day one.
For the next three weeks, Donisha stayed right by Emora’s side in the NICU. Nurses taught her how to adjust and care for Emora’s feeding tube, plan for critical doctor’s appointments, and manage her own health as the mother of a newborn. When it became evident that Emora’s medical needs were increasing, Donisha felt a wave of questions, anxieties, and complete exhaustion. When Emora was well enough that she could prepare to go home, Donisha worried that she wasn’t ready to take care of Emora by herself.
“I honestly thought I was just going to deal with caring for my baby, her feeding tube, and doctor’s appointments,” Donisha says. “When I learned about all the other things I needed to know about managing her condition, I kept asking myself, ‘What am I going to do?’”
Thanks to the hospital’s prompt response, Emora received an early referral to the Carolina Caring Cardinal Kids pediatric palliative care program.
Cardinal Kids is a community-based healthcare program for children who face serious illnesses. The program’s goal is to help children experience joy despite their medical challenges and to provide families with the holistic support they need to navigate their child’s healthcare journey.
Donisha and Emora first met the Cardinal Kids team at the hospital. Cardinal Kids worked alongside the family and Emora’s physicians to prepare a full care plan, and once Emora was sent home from the hospital, the Cardinal Kids team informed Donisha that they would follow Emora’s progress by providing palliative care directly in the home.
This early referral was a game changer for Emora and her mother. Within the first few visits, Emora’s nurses were able to help Donisha understand her daughter’s palliative care plan. They took time to provide in-home training on Emora’s medical devices and medications, an educational aspect which helped Donisha feel better equipped to manage her daughter’s medical needs.
“At first, I didn’t want my daughter to need palliative care,” says Donisha. “I didn’t like those words. But the Cardinal Kids team kept coming back to help, and after watching them work with Emora, I soon realized they knew everything about the care we needed.”
“I don’t know how I would have managed if I were left to figure it all out on my own,” Donisha shares.
Early referral and timely palliative care made all the difference for Emora’s development. Now, three years after her diagnosis and early referral to the Cardinal Kids program, Emora and her mother have developed a strong bond. They enjoy life together despite the challenges it brings. Emora is now thriving in school, making friends, and settling into a routine that supports her wellness and social skills.
Medications and visits from Cardinal Kids nurses continue to play a huge role in Emora’s quality of life, helping her stay comfortable enough to attend school. Emora is a remarkable little girl with a personality that lights up the room. She is an avid cheerleader of her brothers and sisters, always happy to watch them play at the trampoline park. Most of all, she holds a vibrant love for the cartoon character and TV show Peppa Pig.
Kayla, one of Emora’s nurses, remarks that Emora has become more active, excited, and social than ever before. “When we first met Emora, she was easily overstimulated,” says Kayla. “Now, she loves interacting with other kids, going to birthday parties, and just having fun. It’s been amazing to see her progress.”
Donisha believes that Cardinal Kids has been a blessing. She is no longer under the immense emotional and mental strain that once held onto her so tightly.
“The Cardinal Kids team kept coming back,” Donisha says. “And it wasn’t just for medical care, but also to show love, and to be there when I cried, and to help me understand everything I needed to know to care for Emora.”
“I love how much they love her. Cardinal Kids is like family now.”
What began as a frightening time has evolved into a journey filled with compassionate care and hope. Emora’s story with Cardinal Kids at Carolina Caring serves as a testament to the invaluable role of early intervention outcomes for children and families facing serious illness.
