Celebrating Rare Disease Month: Bet You’ve Probably Never Heard of OEIS Complex!

 

Neela

Even many medical professionals may only see it once — if ever.

OEIS complex is an extremely rare congenital condition, estimated to occur in about 1 in 200,000–400,000 births. The name OEIS comes from the four main features present at birth: Omphalocele, Exstrophy of the cloaca, Imperforate anus, and Spinal defects. It is complex, life-altering, and requires highly specialized medical care from day one.

Because OEIS is so rare, finding experienced medical teams is a major challenge. Families often must deliver at or relocate to major tertiary hospitals. For those living in rural or remote areas, access to ongoing care can mean constant travel, long separations from home, and limited access to knowledgeable providers, therapists, or trained caregivers once they return home.

OEIS is not a “one-time fix.”

Across a lifetime, individuals with OEIS may face:

• Multiple, staged surgeries beginning in infancy

• Long-term bowel and bladder management needs

• Mobility challenges related to spinal differences

• Chronic pain or orthopedic complications

• Ongoing urological, gastrointestinal, and neurological care

• Social, emotional, and mental health challenges as they grow

The impact extends far beyond the individual.

Parents often find themselves navigating intensive medical decision-making, prolonged hospital stays, financial strain, and emotional exhaustion — all while becoming experts in a condition few others understand. Siblings may grow up surrounded by hospitals and routines, developing empathy and maturity early, while also carrying worry, responsibility, and questions about the future.

And yet — there is resilience here, too.

Families affected by OEIS build community across distances, share hard-won knowledge, and advocate fiercely for better awareness and care. Individuals with OEIS continue to grow, adapt, and define full lives on their own terms — even when the path is anything but easy.

This Rare Disease Month, we’re shining a light on conditions like OEIS to say:
Rare doesn’t mean impossible. And no family should have to navigate it alone.

💜 Meet Neela, a member of the MSI Press family. 2009 Miracle Baby of Stanford University Hospital, she is still going strong and developing quite an artistic talent. Maybe one day you will see her illustrations in MSI Press books!

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