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Delia’s Story

Delia’s Story

PromptCare’s enteral nutrition brings reliable support to young woman after life-altering tragedy

David was 12 years old when his sister Delia was born. “According to my parents, she was not planned, but she was definitely the greatest blessing ever,” he recalls. He remembers every detail of her life. From her first steps to her graduation, he was always there. But two years ago, Delia’s promising young life was profoundly altered by a rare and unexpected tragedy.

For Delia’s 22nd birthday, David had planned a fun weekend trip to see one of their favorite artists in concert together. But the night before their flight was scheduled to take off, he received a phone call from their mom. Delia had fainted, and an ambulance was on the way. He recalls his mom sounding concerned, but not panicked. The family focused on following Delia to the hospital.

The ambulance landed at the local ER in a blur of flashing lights, beeps, and urgent voices. “When I saw her come out of the ambulance, I immediately knew something was very wrong,” says David. “I had never seen anybody in that condition. She was convulsing, almost like a seizure.”

The ER team sprinted into action to complete a series of neuroimaging scans. That’s when David and his parents found out Delia had experienced an arteriovenous malformation (AVM) rupture. She had a brain hemorrhage resulting from severe brain bleeds, which caused two strokes. She was immediately rushed to the neurology ICU at the closest trauma hospital.

The AVM rupture Delia sustained occurred when an abnormal tangle of blood vessels in her brain burst, leading to bleeding in the surrounding tissues. Although everyone was unaware of the condition due to her leading a symptom-free life prior to the rupture, Delia’s doctors confirmed the malformation had been present since birth. High-pressure blood-flow through these fragile vessels eventually caused them to rupture, which resulted in sudden and severe neurological impact, marking the first devastating presentation of the condition.

Throughout the night, doctors monitored Delia. She struggled significantly, undergoing two procedures within 24 hours to stop the bleeding in her brain. The intense stress caused additional problems with her heart and regulatory system, and because of the severe bodily trauma, she endured two strokes.

Once she was stabilized for transport, Delia was sent to the best possible hospital to treat her. She remained in the neuro ICU for the next four months. Throughout this time, she experienced severe neurological storming, where it took months to regulate her temperature. When her temperature reached 109 degrees, her doctors thought they’d lose her. “She wasn’t supposed to make it through that first night,” recalls David. “Then she wasn’t supposed to make it that first week. Then that first month. Tragedy struck and just completely changed our lives. But she kept fighting, so we did our best to fight along with her.”

In September 2022, Delia was transferred to a rehabilitation center, where she advanced to the next stage of her journey. For the next four months, David and their parents continued to visit her every single day, including weekends, and even spent nights at the facility to learn how to care for her medical needs.

But the rehab center is not intended for long-term care, so the family was met with two choices: bring Delia home for recovery or enroll her in a full-time skilled-nursing facility. The family made their decision with unwavering determination, and in 2023, Delia was discharged and sent home to be in the full-time care of her loved ones.

David is more than Delia’s brother. He’s also her legal guardian, and, along with their parents, her caregiver and support system. At home, the stark reality of his sister’s condition set in. She remains in a vegetative, minimally conscious state, requiring around-the-clock care, respiratory therapy, and enteral nutrition. She’s not responsive in any way, and requires assistance with bathing, grooming, and feeding.

“You learn about this as you go,” says David. “I don’t know if people understand how many moving pieces are involved with providing care to someone at this level.”

When AVMs rupture in the brainstem, the hemorrhaging can damage the tissue responsible for swallowing, leading to dysphagia, or difficulty swallowing. This necessitates alternative feeding methods to ensure adequate caloric intake, hydration, and overall nutrition. In Delia’s case, she relies on enteral tube feeding.

PromptCare’s Enteral Nutrition team oversees Delia’s tube-feeding regimen, which is meticulously monitored to maintain her health, weight, and comfort, and to prevent aspiration. Her nutritional needs are administered enterally through a gastronomy tube, or G-tube. Her daily food includes formula specially designed to meet her dietary needs with a reliable nutrient composition containing carbohydrates, proteins, fats, fiber, vitamins, and minerals, all of which are essential for optimal body function and growth.

As Delia’s legal guardian, David’s primary role in her care is to facilitate doctors’ appointments, paperwork, and vendors. As he says, “If there’s even one company such as PromptCare that can make someone in my shoes have an easier, less stressful day, then that means more to me than you know. For me, PromptCare comes in first place for how efficient everything is.”

PromptCare provides Delia’s formula and feeding supplies, such as bags, syringes, and pump water. David has never missed an order or had an issue with PromptCare, thanks to the Verbal Care app, which notifies him with a monthly pop-up alert when it’s time to reorder supplies or renew a prescription.

And the family is in close contact with Carolyn Leonard, MS, RD, CNSC, PromptCare’s Director of Nutritional Product Support. “With resources like a dietitian on staff, and the ease of the Verbal Care app, I don’t need anything else. It’s that easy. We reach out to Carolyn with questions, and she responds quickly. She’s amazing.”

To explore all potential avenues for improving Delia’s condition, David sought out information on hyperbaric oxygen therapy (HBOT). This innovative therapy, often used to promote healing in various conditions, involves breathing pure oxygen in a pressurized room or chamber. The family’s hope is that HBOT enhances oxygen delivery to Delia’s brain, aiding in the reduction of AVM symptoms and improving Delia’s overall neurological function. Her treatment is currently underway in Louisiana.

While HBOT is a relatively under-researched therapy in the neurological field, the family considers it worth trying given the severity of his sister’s condition, as well as her young age. They embraced this option after participating in detailed discussions with Delia’s healthcare team and in-depth counseling from Dr. Paul Harch, the physician overseeing Delia’s HBOT care for two months.

Delia’s journey is ongoing. She remains under the vigilant care of her medical team, including neurologists, respiratory therapists, and nutritionists at PromptCare. Her family’s support and faith continue to inspire hope in her recovery. “There’s little to no risk to my sister. There are no meds or surgery. It’s pressurized oxygen, and it’s been shown to help a lot of people,” says David. “We would be happy with any progress she makes, even if she does not walk out of there on her own two feet. We hope for some improvement in her level of consciousness.”

Delia’s story emphasizes the importance of family when supporting a loved one with a rare disorder, and underscores the necessity of collaborative, compassionate care. “Looking back, it’s scary to imagine we were supposed to be on a plane together six hours later, and it could have happened on the plane. Or she could have been driving alone on the highway. We look at those things as reasons why she was supposed to make it through this.”

Their journey illustrates that even in the face of adversity, the bonds of family can light the way forward. Through the family’s collective strength and the steadfast support of PromptCare, Delia’s story is the embodiment of the enduring power of love, faith, and perseverance.

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June 20, 2024