Sara's Story
Sara was born with a rare genetic condition that affects her skull's development, requiring multiple life-changing surgeries. Thanks to expert care, she continues to thrive—read her inspiring story.
Born with Muenke Syndrome, a rare genetic condition, six-year-old Sara Higgins has faced incredible challenges from an early age. Despite this, she continues to thrive with the expert care and support of Children’s Health Ireland. Her journey highlights the strength of children facing medical adversity and the vital role of specialist care in transforming lives.
Six-year-old Sara Higgins was born with Muenke Syndrome, a genetic condition that causes the joints of the skull to fuse too early during prenatal development.
This can lead to various complications, as the brain may not have enough space to grow. It can also result in potential hearing loss, vision impairment, developmental delays, and other challenges. While Sara has some vision and hearing impairments, developmentally, she is thriving and described by her parents as “bright as a button.”
Sara’s parents, Diane and Kevin, were unaware of her diagnosis during pregnancy, but it became clear shortly after her birth that something was amiss. At just six weeks old, Sara had her first visit to Children’s Health Ireland at Temple Street, where a multidisciplinary team began caring for her.
Shortly before she turned six months old, Sara underwent her first major surgery on her skull. During this six-hour procedure, which included a blood transfusion, metal plates and external metal bars (called distractors) were inserted into her skull. She now bears a zig-zag-shaped scar stretching from ear to ear.
When Sara returned home a week after surgery, Diane and Kevin faced the challenging task of turning the distractor bars twice daily to gradually expand the space in Sara’s skull. Over several weeks, they achieved a total expansion of 28.5mm.
The family made weekly trips from Cork to Children’s Health Ireland at Temple Street for X-rays to monitor her progress. Reflecting on this experience, Diane shares:
“Children’s Health Ireland at Temple Street supported us throughout the process, even during emergencies. There was nothing they couldn’t handle.”
Over the past six years, Sara has undergone multiple surgeries, including two further expansion surgeries to accommodate her brain’s growth and development. She has also attended countless appointments with her consultant, Mr. Dylan Murray, and the craniofacial team. Diane describes Mr. Murray as “a wizard” and “a safe pair of hands,” providing immense reassurance to the family.
“As parents, handing your child over to someone else’s care is the scariest and most upsetting thing you will ever do in your life. Being able to trust and know, deep in your heart and soul, that they will care for your child as if they were their own is the most wonderful and gratifying feeling in the world.”
Diane also highlights the misconceptions and challenges faced by those with facial differences. “As a society, we still have a way to go in accepting people who look different, There is still a lot of work to do to ensure that people with facial differences aren’t treated in ways that isolate them.” she says.
Diane believes that openness and honesty have worked well for their family. Sara confidently explains her condition to those who are curious, saying, “I have a delicate head, and I have to mind it.”
Although Sara faces challenges, including hearing loss and vision impairment, Diane proudly notes that her daughter continues to excel developmentally. Sara is going from strength to strength and will remain a patient in Children’s Health Ireland at Temple Street as she grows, with further surgeries expected in the coming years.