When Libby Means was pregnant with her son Hayes, she faced every expectant parent’s worst fear. Throughout her pregnancy, doctors discovered she had little to no amniotic fluid —a condition that often signals serious complications for the baby. The medical team discussed with Libby and her family the possibility that Hayes might not survive after birth.

“We prepared to deliver a child that we would quickly say goodbye to,” Libby said. “We met with the hospice team, pediatric surgery, the neonatal intensive care unit and others to be ready for whatever was coming. We didn’t think we would be leaving the hospital with a newborn.”

But Hayes had other plans.

A premature arrival with big challenges

On April 18, 2022, Hayes entered the world at just 33 weeks of gestation — seven weeks earlier than expected. Babies born this early face numerous challenges, as their organs and body systems haven’t had enough time to fully develop in the womb.

Hayes was diagnosed with multiple conditions that would require immediate and ongoing medical care:

• Preterm birth: When babies are born before 37 weeks of pregnancy, they’re considered premature. At 33 weeks, Hayes missed crucial development time, particularly for his lungs, digestive system and other vital organs.
• Multiple congenital anomalies: This medical term describes several issues that occur when a baby is developing in the womb. These aren’t caused by anything the parents did — this happens during the early stages of pregnancy when organs and body parts are forming.
• Imperforate anus: This condition means Hayes was born without a normal anal opening, making it impossible for waste to leave his body naturally. This serious condition requires surgical correction and often multiple procedures to help create a functioning digestive system.

Coordinated care from the start

Even before Hayes was born, Libby’s care involved multiple specialists — maternal-fetal medicine, neonatology, pediatric surgery and others — working together to prepare for every possible scenario. That kind of collaboration is part of how Norton Children’s supports families with complex diagnoses through the Fetal Care Program, which helps connect specialists and guide families through each step of care, from pregnancy through delivery and beyond.

7½ months in the NICU

Instead of going home with his parents after a short stay, Hayes began a long journey in Norton Children’s Hospital’s neonatal intensive care unit (NICU). The NICU is a specialized unit designed to care for newborns who need extra medical support to survive and grow.

“Miraculously, he had a will to live, and Norton Children’s NICU helped him fight,” Libby said.

During his extended stay, Hayes underwent more than 20 surgeries. Each procedure was carefully planned by a team of specialists — from pediatric surgeons to anesthesiologists, neonatologists and specialized nurses — all collaborating closely to support his recovery.

For Libby and her family, those 7½ months meant daily trips to the hospital, learning to navigate complex medical terminology, and holding onto hope during the most challenging moments. NICU families often describe this time as an emotional roller coaster — celebrating small victories like gaining weight or breathing without assistance, while also facing setbacks and complications.

Lifesaving emergency care

Hayes’ medical journey didn’t end when he finally went home. In May 2023, when he was just over a year old, he developed what doctors first thought was a bowel obstruction — a serious condition where something blocks the intestines. It turned out to be more of a restriction in blood flow to part of his intestine, a complication that can be just as dangerous if not treated quickly.

The medical team had to work quickly to identify the problem and surgically correct it, ensuring Hayes’ digestive system could function properly again.

Emergency surgery “saved his life again,” Libby said, highlighting the ongoing relationship between Hayes and his care team.

Understanding Hayes’ conditions

For families facing diagnoses similar to Hayes’, it’s helpful to understand what these conditions mean:

• Oligohydramnios (low amniotic fluid) during pregnancy can indicate issues with the baby’s kidneys or other developmental issues. Amniotic fluid helps cushion the baby and aids in lung development.
• Premature birth affects about 1 in 10 babies in the United States. While medical advances have greatly improved outcomes for preterm babies, they often face challenges with breathing, eating and maintaining body temperature, and they are at higher risk for infections.
• Congenital anomalies affect about 1 in 33 babies born each year. They can range from minor issues that require little treatment to complex conditions requiring multiple surgeries and ongoing care.

The power of specialized care

Hayes’ story illustrates the critical importance of specialized pediatric care. The Norton Children’s Hospital team provided not just medical expertise, but also emotional support for the entire family during an incredibly difficult time.

“We are forever grateful to Norton Children’s and all of the knowledgeable and compassionate staff,” Libby said. “Two of our nurses, Robin Dunn and Tish Liter, were such a huge part of our story, and we’ll always be thankful for them.”

Libby also shared special appreciation for David S. Foley, M.D., who performed many of Hayes’ surgeries leading up to his discharge, and Sheldon J. Bond, M.D., who led the emergency surgery in May 2023. “They were both crucial to my child being alive,” she said.

Norton Children’s multidisciplinary approach — uniting maternal-fetal medicine, neonatology, pediatric specialists, surgery and specialty nursing — helps ensure families with complex pregnancies receive connected, coordinated care from the very beginning.

Hope for other families

Today, Hayes continues to grow and thrive, a testament to both his fighting spirit and the dedication of his medical team. His story offers hope to other families facing similar medical challenges.

For parents receiving difficult news during pregnancy or after a child’s birth, Hayes’ journey shows what is possible. Programs like the Norton Children’s Fetal Care Program continue to advance care for complex pregnancies, bringing together every specialty needed to give babies like Hayes the best possible start. Libby’s decision to share Hayes’ journey may help other families know they’re not alone, and that even in the toughest moments, there can be reasons for hope.

If you or a loved one has received a prenatal diagnosis and you’re seeking specialized fetal care, the Norton Children’s Fetal Care Program is here to help. Our multidisciplinary team provides expert, compassionate care for fetal conditions from diagnosis through delivery and beyond. Call (502) 629-5550 to speak with a nurse navigator.