What would you do if doctors told you your unborn baby might never survive? For Naffi and Racheli Goldman from Manchester, that heartbreaking question became a reality.

During a routine pregnancy scan—later confirmed with a detailed 3D scan—specialists discovered that their baby girl had an exceptionally rare combination of congenital conditions. These would affect nearly every aspect of her life: her skull, spine, vision, hearing, and breathing. Doctors explained that the outlook was devastating and described the pregnancy as “not compatible with life.” They advised ending it. The couple, who had been trying to conceive for two years, chose instead to continue, determined to give their daughter a chance.

Batya was born on 3 January with multiple complex diagnoses, including Pfeiffer syndrome, Antley-Bixler syndrome, and spina bifida. Pfeiffer syndrome is a rare genetic craniosynostosis disorder in which the bones of the skull fuse prematurely, leading to a misshapen head, prominent or bulging eyes, and midface underdevelopment. Antley-Bixler syndrome adds further skeletal and craniofacial complications. Spina bifida involved a spinal defect. The combined effects left Batya deaf, blind, dependent on a ventilator to breathe, with a malformed skull and a twisted spine. Around 80 percent of children with such severe presentations do not survive beyond the first few months, yet Batya defied the odds.

She spent her early months in intensive care after respiratory failure and other complications. Her father later admitted that her appearance—enlarged head and bulging eyes—was initially frightening, even though the family had been prepared for severe disability. Despite the challenges, the Goldmans brought her home and devoted themselves to her round-the-clock care. Naffi gave up work to help full-time.

When the family later shared photographs of Batya online to raise awareness and funds for her ongoing medical needs, they were met with a wave of cruel comments. Online trolls called her a “monster” and said she should have been killed. The parents publicly defended their decision, stating they had no regrets and that their daughter was deeply loved. They emphasized that every life has value and that they were focused on keeping Batya alive and comfortable.

Batya’s story highlights both the medical complexity of rare overlapping craniofacial and spinal syndromes and the profound ethical and emotional decisions parents face when prenatal diagnoses are dire. It also underscores the harsh reality of online judgment directed at families of children with visible differences. Through it all, Naffi and Racheli have remained steadfast: they chose life for their daughter, and they continue to care for her with love and determination against extraordinary odds.

Sources

• Somerset Live, The Sun, Daily Mail / SWNS reports (December 2018–January 2019) on Batya Goldman’s prenatal diagnosis, birth with Pfeiffer syndrome, Antley-Bixler syndrome and spina bifida, survival against medical expectations, and the family’s experience with online trolling after sharing her photos
• Family statements detailing the decision to continue the pregnancy despite advice that the condition was “not compatible with life,” and their ongoing care for their daughter