A UK mother with a 1-year-old has revealed that her son’s life feels like a ticking powder keg due to his condition.
Nine months after he was born, Emma Brazier’s son Lucas was diagnosed with craniosynostosis – a rare birth defect that occurs when the bones in a baby’s skull join together too early before a child’s brain is fully formed.
“The thought of the surgery is very distressing and I still become very overwhelmed when thinking about it,” Brazier, who is from Barnsley, England, told NeedToKnow.online.
“I feel as though if we did not opt for the surgery, it would feel like living with a time bomb,” she added.
Without the skull removal operation, Brazier, 27, and her partner Jordan Carter, 29, were told that Lucas could have medical issues such as seizures, blindness and brain bleeds.
The surgery will happen when he turns 18 months old and doctors will need to remodel his head shape by taking out two thirds of his skull.
In a procedure called total calvarial remodeling, surgeons will cut over the top of Lucas’s head from ear-to-ear, and then will pull the skin and soft tissues over his forehead to expose his skull. After the skull fragments are removed, physicians will re-shape the scalp by cutting and trimming the bone to form a more normal shape.
“It is an extremely upsetting experience to think that Lucas will require this surgery within the next six months,” Brazier said.
Despite the pain, she acknowledged that the operation is “the best option” for her son and “will give him the best chance of living a full and healthy life.”
Her partner, Carter, was also born with the defect.
“Jordan has been able to explain the extreme bullying and self-esteem issues that can come along with having craniosynostosis and a visibly different shaped head,” Brazier explained.
While awaiting heir son’s surgery date, Carter and Brazier hope to raise awareness about craniosynostosis.
They have also set up a JustGiving page to help raise funds for Alder Hey Children’s Charity.
Craniosynostosis reportedly affects between 1 in 1,800 babies in the UK.
“I can’t imagine that any mother would not be worried about their child undergoing such major surgery on such a vital part of their body, very close to the main organ in his body,” Brazier noted.
“We felt it was important to share our experience and hopefully inform more people, parents and health professionals about this condition.”
