Miley’s journey: How lifesaving NICU care led to answers and a cystic fibrosis diagnosis at Manning Family Children’s
- Category: Patient Stories, Neonatal ICU, Pulmonology
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In December 2024, Ashlyn Viola and her fiancé, Tyler Cook, learned they were expecting their third child. The pregnancy began normally, and they anticipated an experience as smooth as their first two. But as Ashlyn entered the late third trimester, she sensed something was different. Her belly grew much faster than before, and everyday movement became difficult, leaving her with an uneasy feeling that this delivery might not unfold as easily as the others.
“My belly was so much bigger than with my other two,” Ashlyn said. “I could hardly walk without holding onto the wall. Something just felt different, but I didn’t know why at the time.”
When Miley was born at their local hospital, Ashlyn felt immediate relief that her daughter had arrived safely and appeared healthy. She was able to hold her and breastfeed shortly after delivery, bringing a brief sense of calm after a challenging pregnancy.
“I only had her in my arms for about four hours after she was born,” Ashlyn said. “I fed her and everything felt fine, and then the nurse noticed her belly was extended. Another nurse said it looked fine, but the delivery nurse did not let it go. She knew something was not right.”
The nurse quickly summoned the NICU team for evaluation. Although there was no immediate diagnosis, she continued to advocate for Miley to be examined further.
“She reached out to me later and told me she recognized the signs because she had gone through something similar,” Ashlyn said. “I really believe she was a guardian angel put in our path. Her voice made all the difference and helped us get answers quickly for Miley.”
Transport to Manning Family Children’s for specialized care
Within 24 hours, Miley was transferred to the Neonatal Intensive Care Unit (NICU) at Manning Family Children’s for specialized care. Ashlyn had just gone through major surgery with a C-section and was still in pain, but her physician agreed to discharge her early so she could make the trip to New Orleans to stay close to her baby.
Miley was transported by a medical helicopter, while Ashlyn and Tyler drove more than three hours to meet her there. Family immediately stepped in to help care for their two toddlers, Jax and Mila, so the couple could focus on their newborn’s rapidly changing medical needs.
At Manning Family Children’s, doctors discovered that Miley had a severe intestinal blockage called meconium ileus. It is often one of the first signs of cystic fibrosis (CF). Around 15 to 20 percent of babies with cystic fibrosis are diagnosed because of meconium ileus at birth.
“I had looked it up on the drive because both of us were carriers for cystic fibrosis,” Ashlyn said. “I remember seeing that meconium ileus was common in babies with CF and I just kept hoping that was not what we were facing.”
At just 3 days old, Miley underwent surgery with Dr. Evans Valerie, a general surgeon at Manning Family Children’s. He and the surgical team worked carefully to clear the blockage in her intestines and relieve the pressure in her tiny abdomen. Although the procedure was successful, the hardest part of Miley’s journey was still ahead.
The morning after surgery, things took a frightening turn. Miley’s oxygen levels dropped, and she needed to be placed back on a ventilator.
“Before we even walked into the NICU that morning, the doctor stopped us and told us what was happening,” Ashlyn shared. “I appreciated that so much, because walking in and seeing her like that without warning would have been overwhelming.”
Miley’s abdomen continued to swell, and by late afternoon she required an emergency second surgery. During the procedure, David Yu, MD, performed the bowel resection and created a stoma, removing a portion of her small intestine that was no longer functioning. The surgical team worked carefully and strategically to preserve as much healthy bowel as possible to support her long-term health. Six weeks later, Dr. Valerie closed the stoma and placed her G-tube as part of her continued recovery.
“It was like watching your baby fight a battle you cannot help with,” Ashlyn said. “You feel so helpless, but you also know you have to stay strong for them.”
Miley faced multiple serious complications in the days that followed. She needed breathing support and blood products to help her heal. She also began experiencing seizures caused by a temporary lack of oxygen affecting her brain. A neurologist reassured the family that while there was mild injury, the brain can often adapt and compensate as children grow.
Those were some of the longest days of Ashlyn’s life.
Understanding cystic fibrosis
At one week old, Miley was officially diagnosed with cystic fibrosis. CF is a lifelong genetic condition that affects the lungs, digestive system, liver, and other organs. About 40,000 children and adults in the United States are living with CF.
Children with this condition often require daily breathing treatments, enzyme supplements to help digest food, and close monitoring to prevent lung infections. Many children visit a specialized CF clinic monthly to support nutrition, growth, and respiratory health. Newer CF medications have helped increase life expectancy significantly, with many individuals now living into their 50s and beyond.
In Miley’s case, genetic testing revealed a very rare combination of CF gene mutations, making her ineligible for the leading medication currently available. The family remains hopeful for emerging gene-based therapies that may provide new treatment options in the future.
“We take things day by day,” Ashlyn said. “But when I look at her now after everything she has overcome, she just looks perfect.”
Hope for Miley’s future
Today, baby Miley continues to grow stronger each day. While her care routine remains intensive, Ashlyn says having Miley home is both exciting and comforting, knowing she’s surrounded by love and supported by an excellent care plan.
For Ashlyn and Tyler, this experience has reshaped their understanding of strength, love, and support. They leaned on one another through every surgery, setback, and long night inside the hospital. Ashlyn shared that she could not imagine walking this journey without Tyler by her side.
“He has been my rock,” she said. “I was recovering from a C-section and he was helping with everything, driving us to New Orleans and trying to keep things as normal as possible for our other two babies. I am so grateful for him.”
Both of their mothers also traveled three hours from home to stay in New Orleans during those first difficult weeks, caring for Jax and Mila so the couple could focus on Miley’s needs. That support, Ashlyn said, made the impossible feel manageable.
Along with family, the medical team at Manning Family Children’s became a second source of strength. Through every setback, the NICU team at Manning Family Children’s was a constant source of strength, clarity, and comfort for the family.
“There is no 'normal' in the NICU, but the nurses do everything they can to make it feel like you are still a mom, not just a bystander,” Ashlyn said. “They let me hold her, even when she was connected to so much equipment. They knew I needed those moments.”
Two of Miley’s primary nurses, Alex Sensenbrenner and Alexis Larkins, became anchors for the family. They celebrated every small victory. Alex even bought Miley tiny onesies to help bring a sense of normal babyhood into a world of wires and monitors.
“Nurse Alex has been with her since day one, and Alexis joined later. They treated Miley like their own,” she said. “They celebrated every tiny milestone with us. They made us feel seen, supported, and never alone. They see you. They support you. They walk this journey with you.”
Ashlyn also appreciated the guidance from neonatologists Staci Olister, MD and Emily Masoumy, MD, medical director of the NICU at Manning Family Children’s. “They were with her when she was at her sickest,” Ashlyn said. “They brought her back to health and watched her around the clock.”
Beyond clinical care, the hospital also provided emotional support through parent groups, milestone celebrations, and simple gestures that made families feel less alone. Looking back, Ashlyn describes the NICU as a place where medicine and compassion come together.
“It is amazing. Miracles happen here every day,” she said. “There is no other hospital we would want our baby at. They gave us hope when we were terrified, and they loved our baby through it all.”
About the Manning Family Children's NICU
September is NICU Awareness Month, a time to honor the babies who begin life in intensive care, the families who stand beside them, and the care teams who help them grow stronger every day. At Manning Family Children's, our nationally ranked Level IV NICU provides the highest level of neonatal care in Louisiana. We are the only hospital in Louisiana and the Gulf South with every pediatric medical and surgical specialty under one roof. Our team, which includes the state's top pediatric subspecialists from LSU Health New Orleans and Tulane University School of Medicine, is ready to care for babies born as early as 22 weeks, many weighing barely a pound.
Our NICU was recently ranked No. 49 in the nation for neonatology in U.S. News & World Report's 2026–2027 Best Children's Hospitals rankings, and it has been operating beyond capacity for more than two years. That is why we are building a new 60-bed Level IV NICU with triple the space of our current unit. The new unit will have private family rooms, advanced technology, and room to grow, so we can always say "yes" to the babies who need us most.
Learn more about our NICU >> | See plans for our new NICU >> | Support Louisiana's Littlest >>
