Her Mother Was a Nurse, But Nothing Prepared Her for Her Baby’s Rare Diagnosis

When Jeanette learned that her unborn daughter might have a medical condition, she hoped the doctors would soon find a clear explanation. As a nurse, she understood how frightening medical uncertainty could be. But nothing fully prepared her for the news that her baby, Catalina, had an exceptionally rare congenital condition.

Catalina was born with a rare form of cloacal malformation known as covered cloacal exstrophy, also called OEIS syndrome in its broader form. The condition affects the development of several organs, including those involved in digestion, urination, and reproduction.

According to Children’s Hospital Los Angeles (CHLA), cloacal exstrophy occurs in approximately one in every 400,000 births. Catalina’s particular form was so uncommon that many medical professionals might encounter it only in textbooks.

A Finding During Pregnancy Changed the Family’s Plans

At Jeanette’s routine 20-week ultrasound, doctors noticed abnormalities involving her baby’s lower abdominal organs. Their initial suspicion was a bladder obstruction, but the diagnosis was not straightforward.

At 28 weeks, Jeanette was referred to a specialist hospital in Los Angeles for an attempted procedure to treat the suspected obstruction before birth. The procedure was unsuccessful, and she went into early labor. She remained in the hospital and delivered Catalina two weeks later.

After Catalina was born, specialists determined that the underlying problem was a cloacal malformation rather than the bladder obstruction they had first suspected. The newborn needed prompt transfer to CHLA for highly specialized care.

Understanding Catalina’s Rare Condition

During early embryonic development, the digestive, urinary, and reproductive systems initially form through a shared structure called the cloaca. In cloacal malformation, this structure does not develop into separate channels as expected.

Some affected babies have underdeveloped organs, while cloacal exstrophy can involve organs exposed outside the abdominal wall. Catalina’s condition was described as “covered” because the exstrophy was covered by skin.

She also had tethered cord syndrome, a condition in which the spinal cord is attached to surrounding tissue and cannot move freely. Her diagnosis therefore required doctors to consider more than one part of her body and coordinate care across several specialties.

Surgery Began Within Her First Day of Life

For newborn Catalina, one of the most urgent priorities was protecting her kidneys and ensuring that waste could leave her body safely.

Within 24 hours of her birth, surgeons performed an ileostomy. This procedure allowed waste from the small intestine to bypass the colon. Further reconstructive procedures were planned for later, when specialists could carefully assess the tiny structures involved.

Her care required collaboration among pediatric surgeons, neurosurgeons, urologists, gastroenterologists, and other specialists. During later surgery, doctors discovered additional abnormalities and adjusted their plans to address Catalina’s individual needs.

Her treatment was staged rather than completed in a single operation. For children with complex congenital conditions, the right approach can depend on detailed imaging, the development of individual organs, and what surgeons discover during treatment.

The Small Moments That Meant Everything

Catalina spent her first two months in the neonatal intensive care unit before being discharged home. For Jeanette and her husband, Edgar, those early months were exhausting and filled with uncertainty.

Jeanette later recalled how meaningful it felt to finally be home with her daughter. Watching Catalina touch her face, turn onto her side, and make baby sounds helped her begin to believe that their family would find a way forward.

Those ordinary moments were precious after weeks of medical procedures and hospital care. They offered a glimpse of Catalina not just as a patient, but as a baby beginning to explore the world around her.

A Growing Girl With Ongoing Medical Needs

By March 2026, Catalina was a happy, energetic 3-year-old who was thriving at home. Her family had recently celebrated six months without a hospital stay — a milestone that once felt difficult to imagine.

Her journey, however, is not over. Catalina continues to receive multidisciplinary care at CHLA, with regular appointments involving specialists who monitor her digestive, urinary, and other health needs. She also receives support to help her eat, absorb nutrients, and manage waste with an ileostomy.

Her medical team emphasizes that reconstructive surgery is not necessarily the end of treatment. Children with complex cloacal malformations may need long-term monitoring and support as they grow.

For Jeanette, the journey has taught her to take each day as it comes. There are setbacks, difficult appointments, and moments when progress feels slow. But there are also new milestones and reminders of how far Catalina has come.

Catalina’s story shows why rare congenital conditions require experienced teams, coordinated care, and support that continues well beyond the first operation. It also reminds us that behind every complicated diagnosis is a child who deserves the chance to grow, play, learn, and simply be a kid.

Source: Children’s Hospital Los Angeles, “CHLA Had All the Answers: Catalina’s Journey with Cloacal Exstrophy,” March 31, 2026.