Ahnyst Haven: A Courageous Journey and the Pelican Krewe’s Compassionate Care in the Face of a Rare Disease

When Heather welcomed her daughter, Ahnyst Haven, into the world, she was a healthy and happy baby. But at just seven months old, Ahnyst started exhibiting unusual symptoms that baffled doctors.

Despite months of misdiagnoses and ineffective treatments, Heather refused to give up. It wasn’t until Ahnyst was transferred to Manning Family Children’s in New Orleans that she finally found the answers she had been desperately seeking.

Ahnyst was diagnosed with an extremely rare autoimmune disorder—Mucous Membrane Pemphigoid— making her the youngest documented case. While her battle was difficult, Heather credits the support of the hospital’s palliative care team, affectionately known as the Pelican Krewe, for helping her navigate the heartbreaking journey of losing her daughter.

Ahnyst’s symptoms started with what seemed like a common cold—coughing, red eyes, and mucus buildup. Soon after, blisters began forming on her body. Concerned, Heather sought medical help in their hometown of Branch, Louisiana, as well as nearby hospitals in Lafayette.

Doctors had diagnosed Ahnyst with impetigo, a highly contagious bacterial skin infection that causes red sores, blisters, and a honey-colored crust, and hand, foot, and mouth disease, a viral infection common in young children that leads to fever, mouth sores, and a rash on the hands and feet. They prescribed topical ointments, antibiotics, and breathing treatments—but nothing worked.

For two months, Heather watched her daughter suffer. Each time they thought she was improving, the symptoms would return, often worse than before. "She was hospitalized for a week, but after being discharged, we found ourselves constantly going back and forth to the hospital," Heather recalled.

Frustrated and desperate for answers, Heather insisted on transferring Ahnyst to New Orleans, hoping the specialists there could finally uncover what was happening to her little girl.

When Ahnyst arrived at Manning Family Children’s in March 2024, she was seen by a team of specialists, including pediatric dermatologist India Hill, MD.  Work up was initiated to evaluate for infectious causes, nutritional deficiency, and autoimmune blistering diseases. Treatment was initiated with medications and nutritional support while awaiting results from skin biopsies, immunologic testing, and extensive laboratory evaluation.

While treatment appeared to help her skin, Ahnyst’s internal condition worsened. Blistering extended beyond just the skin surface, involving the lining of her mucous membranes [eyes, nose, mouth, diaper area] as well as her lungs. Severe damage to the lungs caused scarring of her airways, making it increasingly difficult for her to breathe.

Serologic testing (called indirect immunofluorescence) detected the antibodies driving her condition and confirmed the diagnosis of a rare autoimmune disease called Mucous Membrane Pemphigoid—a condition in which the immune system produces antibodies that attack the body's own tissues, causing painful blisters and scarring.

This disease is exceptionally rare in pediatric patients, and at just 16 months old, Ahnyst was the youngest documented case, prompting her doctors to consult with specialists from across the country.

“Dr. Hill explained to me that her immune system was attacking itself,” said Heather. “There was no cure for the disease but there were treatments to help suppress the immune system and reduce symptoms.”

Ahnyst’s medical team started aggressive treatments, including steroids, immunosuppressants, and Rituximab, a monoclonal antibody typically used for severe cases of the disease.

Despite the medical team’s best efforts, the disease continued to progress, with severe lung scarring and mucus plugs leading to multiple medical emergencies.

“Blisters would appear, then fade, but each time they returned, they left behind more scarring in her lungs and airways,” said Heather. “She would have episodes where she just stopped breathing. The mucus plugs in her lungs were blocking her airways, and she coded about three or four times. The doctors were performing scopes to examine her lungs, desperately searching for any solution.”

While in the pediatric intensive care unit (PICU), Ahnyst required frequent intubation due to recurring mucus plugs blocking her airways. To provide a more sustainable solution, doctors decided to place a tracheostomy tube, which initially helped stabilize her breathing. However, over time, her condition continued to deteriorate despite these interventions.

"At one point, they even talked about a double lung transplant for her. They held a meeting with other specialists who had experience treating older patients with this condition, and they decided it wouldn't be a good idea for Ahnyst. Even if she received new lungs, her immune system would still attack them."

Zachary Daniels, MD, MS, a pediatric critical care medicine physician and one of the first doctors to care for Ahnyst in the PICU, emphasized the challenges of treating such a rare autoimmune disorder, especially in someone so young.

"Autoimmune diseases are incredibly complex because the body is essentially attacking itself," Dr. Daniels explained. "Treatment often involves suppressing the immune system, but that comes with a significant risk of infection. What made Ahnyst’s case even more challenging was that she was the youngest patient ever recorded with this disease. There was limited medical history to reference for someone her age—we had to rely on cases in older patients, which didn’t always apply. Despite the team’s best efforts, the disease was progressive and unpredictable. Even in an era of medicine where we have many tools at our disposal, our therapies don’t always succeed. This was heartbreaking for the medical team and Ahnyst’s family."

In the end, it was complications with Ahnyst's lungs that proved too much for her to overcome.

"The more scarring there was, the more her airways collapsed," Heather explained. "At one point, her left lung completely collapsed. They intubated her and gave her body a little rest for about two weeks, and her lung recovered. But every time the blisters came back, they left more scars behind. And there was just nothing they could do for scarring of the lungs."

The Role of the Pelican Krewe at Manning Family Children’s

As Ahnyst’s condition worsened, the Pelican Krewe—the hospital’s palliative care team—stepped in. The Pelican Krewe is more than a medical team—they're a source of comfort and support for families facing serious illness. Comprised of doctors, nurses, social workers, and therapists, the team focuses on more than treatment, helping families navigate challenges while ensuring the best quality of life. From symptom management to emotional support, they care for the whole child—body, mind, and spirit.

Rather than making decisions for Heather, the Pelican Krewe stood by her side, offering emotional support and ensuring she had a say in every aspect of her daughter’s care.

“They never pushed me to make a decision,” Heather recalls. “They always sat by me, listened to me, and helped me understand what was happening.”

The Pelican Krewe also supported Ahnyst’s older brothers, ensuring they were included in her final moments. When it became clear that Ahnyst wouldn’t be able to leave the hospital, her siblings were brought to New Orleans to spend time with her. The team arranged for them to stay at the Ronald McDonald House, allowing them to be close to their sister during her last week.

Heather and the Pelican Krewe fulfilled Ahnyst’s final wishes. They planned a special weekend filled with her favorite foods, princess visits, and a chance to go outside—something she hadn’t done in months.

Despite everything she was going through, Ahnyst always found something to smile about. Even in the hospital, she remained a light to those around her, making friends and sharing laughter. "I think that’s what kept me going—waking up every day and finding ways to make her smile," Heather said.

As the disease progressed, scarring took Ahnyst's voice, but she still found ways to communicate. Her family taught her sign language since she could no longer speak. She would smile, shake her head to indicate yes or no, and express herself in other ways.

"She was so strong, and even in the hardest moments, she found joy,” Heather shared.

Sadly, Ahnyst’s condition declined rapidly, and on a Friday night in June, Heather made the heartbreaking decision to have the medical team remove the ventilator, allowing her daughter to peacefully pass.

“They let me hold her until she passed,” Heather says. “They made sure I was never alone.”

A Legacy of Love and Strength

Ahnyst story is one of resilience, love, and courage. Even in the face of unimaginable pain, she found reasons to smile, communicate through sign language, and bring joy to those around her.

Heather extends her deepest gratitude to the Pelican Krewe for their compassion during the most difficult time of her life, and to all of the doctors, nurses, and staff who cared for Ahnyst, and treated her as their own, including Dr. Hill, Dr. Daniels, social worker Trey, and Miss Diane. Their kindness, dedication, and willingness to fight for Ahnyst will never be forgotten.

“She touched so many lives,” Heather says.

To this day, Heather finds comfort in small signs, believing that Ahnyst is still with her.

“Before she passed, I told her to show me signs of a butterfly or a red cardinal. And sure enough, I see butterflies all the time, and that’s something I’ve been holding on to. She will always be with me.”

Though Ahnyst’s time was short, her impact was profound. Through her story, awareness is raised for Mucous Membrane Pemphigoid, ensuring other families may find answers and hope in the future.

“I want people to know that this disease doesn’t just affect older people—it can happen to babies too. If her story helps just one family get answers sooner, then her fight wasn’t in vain.”

For families facing a similar journey, Heather offers this advice:

Hold your babies close and make as many memories as possible. Be their biggest support system—your love keeps them strong. You never know if they have a fighting chance, but being there is what matters. For Ahnyst, waking up and seeing her mom by her side brought her the most happiness."

For more information about the Pelican Krewe at Manning Family Children’s, visit https://www.manningchildrens.org/services/palliative-care/.

###

About Manning Family Children’s: Manning Family Children’s is a 263-bed, non-profit academic pediatric medical center that offers comprehensive healthcare services, including over 40 pediatric specialties, just for children. With more than 600 pediatric providers, Manning Family Children’s offers a comprehensive array of specialized pediatric services in Louisiana and the Gulf South. In addition to its main campus located in New Orleans, Children’s operates a network of specialty clinics across Louisiana, including in Covington, Baton Rouge, Alexandria, Lafayette, and the Mississippi Gulf Coast. Children’s offers primary care at 17 convenient locations, along with a network of statewide pediatric affiliations. Children’s is a proud member of LCMC Health, a Louisiana-based, not-for-profit hospital system which also includes New Orleans East Hospital, Touro, University Medical Center New Orleans, West Jefferson Medical Center, East Jefferson General Hospital, Lakeview Hospital, and Lakeside Hospital. Learn more at manningchildren’s.org.