A mum has devastatingly revealed how her baby son was born with a life-changing birth defect, which leaves the family with no choice but to opt for a skull removal surgery.
Emma Brazier, 27, has opened up about how her one-year-old son, Lucas, was born with craniosynostosis, which is a birth defect that occurs when the bones in a baby's skull fuse together too early.
If little Lucas does not have the all-important surgery he so desperately needs to remove part of the skull, it could lead to him having seizures and going blind.
Although the tot was not formally diagnosed for nine months after his birth in December 2021, the importance of Lucas having the surgery when he is 18 months old has been drummed into the parents mind.
Mum Emma Brazier, 27, and dad, Jordan Carter, 29, from Barnsley, have now opened up about Lucas's surgery, revealing that surgeons will remodel his head shape by removing two thirds of his skull.
However, Emma, an accommodation advisor, has been left distressed at what her little boy faces, saying: "It is an extremely upsetting experience to think that Lucas will require this surgery within the next six months.
"The thought of the surgery is very distressing and I still become very overwhelmed when thinking about it.
"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."
She continued to say that while she is stressing about the outcome of the surgery, she understands how important it is.
Emma said: "However I am aware that this is the best option for him and will give him the best chance of living a full and healthy life.
"It was explained that if Lucas was left untreated, there was a one in five chance that he could develop intracranial pressure, which eventually could lead to seizures, blindness, brain bleeds."
She added: "I feel as though if we did not opt for the surgery, it would feel like living with a time bomb.
"Never knowing if he would be one of the five children who could develop pressure and other implications from this."
In the next six months, Lucas will undergo his life changing surgery – called total calvarial remodelling- which will see surgeons making an incision over the top of Lucas's head from ear-to-ear.
By doing so, this will allow them to pull the skin and soft tissues over his forehead in order to expose the skull.
Emma explained: "The surgeon will then remove two-thirds of the front portion of the skull and re-shape it by cutting and trimming the bone to form a more normal shape."
While Lucas was born with the defect on December 2021, he was not officially diagnosed by doctors until the 7 September following numerous X-ray's and CT scans on his skull.
Despite the late diagnosis, Emma knew Lucas most likely had the defect, as his dad Jordan was also born with the condition.
Because of this, Jordan was able to offer Emma an insight into life with craniosynostosis, and the potential troubles it may cause their son in the future.
She said: "We are aware of potential self-esteem issues that he may develop later on in life following bullying for the shape of his head.
"Jordan has been very supportive to me throughout this diagnosis. Luckily, he did not have any medical intervention, and did not develop intracranial pressure, however I believe the surgery was not as prevalent or as readily available nearly 30 years ago due to a lack of research into the condition.
"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."
The 27-year-old added: "Jordan struggles to find helmets that fit him correctly and has been bullied or ‘bantered’ about his head shape since a very young age, up until the present day – even by other adults.
"He has added an insight into our decision on opting for the surgery."
As they wait for the surgery, Emma and Jordan have made it their mission to raise more awareness on craniosynostosis.
In order to do so, they have set up a JustGiving page to help raise funds for Alder Hey Children's Charity, and are taking part in numerous fundraising events.
Emma added: "Following our first appointment in September, we were absolutely blown away by the hospital and the care that the children receive whilst in their care.
"Another aim of the fundraising is to raise awareness of craniosynostosis – it only affects 1 in 2500 live births in the UK, so many people are not aware of the condition or its potential impacts on children.
"We felt it was important to share our experience and hopefully inform more people, parents and health professionals about this condition."
