When Lucas (11 months) was born last December, parents Emma Brazier (27) and Jordan Carter (29) of Barnsley in England were unaware that their son was born with the rare condition craniosynostosis.
The Jam Press news agency writes it.
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According to PEDIATRIC Craniosynostosis is a malformation of the skull, which in most cases is present at birth.
The condition means that the various bones of the skull grow together and close prematurely, which prevents the skull from growing and making room for the brain.
It has to remove two-thirds
The condition is usually discovered at birth, but diagnosis can take longer when signs are not apparent.
It wasn’t until Lucas was nine months old that it became clear he was suffering from the disease, which occurs in only one in 1,800 newborns in this country.
Doctors said he must remove two-thirds of his skull or risk going blind and having severe seizures.
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According to the NHI, this operation involves removing parts of the “seam” fused into the skull, so that the skull can expand and grow as the brain does.
– It’s extremely upsetting to think that Lucas will have to have this operation in the next six months, says mother Emma Brazier, according to Jam Press.
FAMILY OF THREE: Lucas was born last December and is due to undergo surgery soon. Photo: Jam Press
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– A time bomb
According to the plan, the son will undergo the extensive operation before he turns 18 months.
– I can’t imagine a mother who wouldn’t be concerned when the baby is having such a major operation, very close to the body’s main organ, says Brazier.
However, the 27-year-old is aware that the surgery is in his son’s best interest.
– We’ve been told he’ll have a twenty percent risk of developing seizures, blindness and bleeding in the corners from the high pressure if he’s not treated.
– If we hadn’t gone for the operation, it would have been like living with a time bomb, he adds.
When the parents received news of their son’s condition in September of this year, after countless X-ray and CT scans, it came as no surprise to the young parents.
Father Jordan Carter was born with the same condition.
– Jordan was very helpful. Fortunately, he escaped the pressure in his brain, even though he didn’t undergo surgery. This operation probably wasn’t as widespread or available 30 years ago, largely due to little research into the condition, Brazier says.
I have devastating news
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Brazier says the man was bullied a lot and suffered from low self-esteem because people teased him about the shape of his head.
– Jordan struggles to find a helmet that fits and has been bullied for the shape of his head since he was very young and even as an adult to this day, explains the 27-year-old.
Brazier says the man provides a lot of insight into the condition, which is reassuring.
Now the couple wants to raise awareness of craniosynostosis, including by raising money for research and running a charity.
– This occurs in just one in 2,500 newborns in England, so many people are unaware of the condition and how it affects babies. We believe it is important to share our experience and in doing so, hopefully help inform people, parents and healthcare professionals about the condition, concludes Brazier.
