When Hannah Sachs went for her 22-week ultrasound, her pregnancy had been progressing smoothly. Then doctors delivered unexpected news: her unborn son had a suspected encephalocele, a rare neural tube defect in which part of the brain or its covering membranes protrudes through an opening in the skull. Hannah, then 32 and a research coordinator living in Cincinnati, Ohio, with her partner Gabriel, was terrified she might lose the baby.

Liam arrived in March 2023, two weeks before his due date, with no major delivery complications. But he looked different from other newborns. A large fluid-filled sac—resembling a bubble and affectionately nicknamed “squishy” by his family—sat prominently on his forehead between his eyes. He was immediately transferred to the neonatal intensive care unit (NICU), where he spent 13 days. After discharge he still required supplemental oxygen because his levels often dropped.

Just two weeks after coming home, Liam developed severe hydrocephalus, a dangerous buildup of cerebrospinal fluid in the brain that can cause damage or prove fatal. At only about one month old he underwent emergency surgery to place a ventriculoperitoneal shunt to drain the excess fluid. “He was already proving to be so strong at such a young age,” Hannah later recalled.

Doctors advised that a far more extensive operation would be needed once Liam reached six months. In September 2023 he underwent an 11-hour procedure at Cincinnati Children’s Hospital to remove the encephalocele and reconstruct much of his deformed skull and face. The surgery, performed by a specialized craniofacial and neurosurgical team, was successful. Because of the location of the defect, surgeons were also able to correct a significant portion of the associated skull abnormality.

Today Liam is a smiling, active toddler who continues to progress on his own timeline. He lives with cerebral palsy and will need the shunt for life, along with ongoing therapies. Yet his mother describes him as a “true miracle” and “imperfectly perfect in every way.” “This life is very different from what I thought it would be, but it is more beautiful and rewarding than I ever thought possible,” Hannah has said. “Liam is doing things on his timeline and in his own way. He is truly a miracle.”

Encephalocele is a rare birth defect that occurs when the neural tube fails to close completely during early fetal development. The frontonasal (or frontoethmoidal) form, which affected Liam, produces a visible sac on the forehead or face. Treatment centers on surgical repair, ideally in infancy, to protect brain tissue, restore skull integrity, and reduce complications. Outcomes vary widely depending on the size and contents of the encephalocele and any associated conditions such as hydrocephalus.

Hannah has spoken openly about the emotional roller coaster—the fear during pregnancy, the trauma of seeing her newborn intubated and undergoing repeated procedures, and the simultaneous mourning of the face she first fell in love with and the excitement of giving him the best chance to grow. Her one wish, she has said, would be to make every step of his journey a little easier. Through it all, the family’s love and Liam’s resilience have turned what began as a frightening diagnosis into a story of hope and determination.

Sources

• The Mirror and The Sun (2025 interviews with Hannah Sachs detailing pregnancy, birth, surgeries, and current outlook)
• Cincinnati Children’s Hospital Craniosynostosis and Cranial Reconstruction Center patient story (“Meet Liam”)
• Additional reporting via Jam Press / NeedToKnow and related international coverage summarizing the family’s account