Family Celebrates Son’s Courage After Surgeries for Rare Condition

When Hannah Sachs welcomed her son, Liam, into the world in March 2023, he arrived with a rare condition that would challenge both him and his family. Liam was born with an encephalocele, a defect where a part of the brain protrudes through a gap in the skull, creating a noticeable fluid-filled sac on his forehead.

Hannah, a 32-year-old research coordinator from Cincinnati, Ohio, experienced a smooth pregnancy until a routine scan at 22 weeks revealed the abnormality. The news was alarming, and Hannah feared for her child’s life. Fortunately, Liam was born without complications, allowing his family to focus on the next steps.

“Seeing him for the first time was a moment I’ll hold on to forever,” she shared. “He was beautiful, and his mere presence was a blessing.” Despite his beauty, Liam’s appearance set him apart from other newborns in the hospital. His family affectionately referred to the sac as his “squishy,” a term that would become part of their daily life.

After spending 13 days in the neonatal intensive care unit (NICU), Liam was discharged but required supplemental oxygen due to fluctuating oxygen levels. Shortly thereafter, he developed severe hydrocephalus, a condition characterized by a build-up of cerebrospinal fluid in the brain, necessitating an emergency shunt placement.

“Seeing him go through his first brain surgery at just one month old was tough,” Hannah recalled. “He was already proving to be so strong at such a young age.” Following the successful procedure, doctors informed the family that Liam would need a larger operation at six months old to remove the encephalocele and perform a full skull reconstruction.

September 2023 marked a significant milestone for Liam as he underwent an 11-hour surgery to address the encephalocele and reshape his skull. “The surgery corrected a lot of the deformities caused by where the encephalocele formed,” Hannah explained. Liam faced a challenging recovery, spending 11 days in the hospital with swollen eyes during the first week.

Despite the hurdles, Hannah remained optimistic. “Every single thing scared him because he couldn’t see,” she said, describing the care routine that involved constant communication to soothe Liam during medical examinations. After the surgery, however, Liam experienced vomiting and irritability, prompting further assessments.

At just 10 months old, Liam was diagnosed with cerebral palsy (CP), a neurological condition affecting movement and coordination. “It wasn’t a surprising diagnosis,” Hannah stated, acknowledging the challenges that lay ahead. “He will have CP for the rest of his life, as well as a shunt for hydrocephalus. But despite it all, Liam is doing really great.”

Liam has been actively involved in various therapies, including occupational, speech, and aquatic therapy, making significant strides in his development. “He’s walking—almost running at times,” Hannah noted with pride. “He is saying a handful of words, including ‘mama’ and ‘dada’. I love hearing his voice.”

Hannah emphasized the progress Liam has made, celebrating each milestone, no matter how small. “Sometimes he babbles and is trying to have conversations, which is great, even if we can’t always understand him,” she added. “Everyone is optimistic that he will speak one day. He is so strong and resilient.”

Living with cerebral palsy presents ongoing challenges, but it also highlights the importance of a supportive and active lifestyle. According to Dr. Zoe Williams, a general practitioner, “Cerebral palsy is caused by a problem with the brain that develops before, during, or soon after birth.” She noted that while the condition is lifelong, many children with CP can lead fulfilling lives with the right interventions and support.

Hannah acknowledged her initial uncertainties about parenting a child with additional needs, stating, “I wouldn’t change Liam for the world. This life is hard but so beautiful.” She reflected on the emotional toll of medical procedures and the resilience they have all shown as a family.

“Liam is imperfectly perfect in every way,” she expressed. “This life is very different from what I thought it would be, but it is more beautiful and rewarding than I ever thought possible. He is doing things on his timeline and in his own way. He is truly a miracle.”

As the family continues on their journey, they remain committed to supporting Liam through every challenge, celebrating his victories and embracing the unique life they share.