When Lucas (11 months) was born last December, parents Emma Brazier, 27, and Jordan Carter, 29, of Barnsley, England, didn’t know their son was born with a rare case of craniosynostosis.
This was written by the news agency Jam Press.
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to me NHI Craniosynostosis is a deformity of the skull that is present at birth in most cases.
The condition means that the various bones in the skull grow together and close prematurely, preventing the skull from growing and making room for the brain.
Two-thirds must be removed
The condition is usually discovered at birth, but diagnosis can take longer when the signs are not so obvious.
Only when Lucas was nine months old did it become apparent that he was suffering from the disease, which affects just one in 1,800 newborns in this country.
Doctors said he must remove two-thirds of his skull—otherwise, he risks going blind and having severe seizures.
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According to the NHI, this operation involves removing parts of the fused “seam” in the skull, so that the skull can expand and grow in line with the brain.
– It’s very upsetting to think that Lucas will have to have this operation in the next six months, says mother Emma Brazier, according to Jam Press.
– Time bomb
According to the plan, the son will undergo an intensive operation before he turns 18 months old.
– I can’t imagine a mother who doesn’t worry when a child undergoes major surgery, so close to a major organ in the body, Brazier says.
However, the 27-year-old understands that the surgery is in his son’s best interest.
We were told that he would have a twenty percent risk of epileptic seizures, blindness, and angle hemorrhage from high pressure if he was not treated.
– She adds: If we hadn’t gone to the operation, I would have felt like we were living with a ticking time bomb.
When, after countless X-rays and CT scans, the parents received news of their son’s condition in September this year, it came as no surprise to the young parents.
Father Jordan Carter was born with the same condition.
Jordan has been very supportive. Fortunately, he got rid of the decompression of the brain, although he did not undergo surgery. The process may not have been as common or available 30 years ago, largely because there was little research into the condition, Brazier says.
I got devastating news
Brazier says the man experienced a lot of bullying and suffered from low self-esteem because people made fun of him about the shape of his head.
– Jordan struggles to find a helmet that fits the shape of his head and has been bullied since he was very young until today, also by adults, the 27-year-old explains.
The man contributes a lot of information about the condition, Brazier says, which is reassuring.
The couple now wants to raise awareness about craniosynostosis, among other things by raising money for research and running a charitable foundation.
– It only occurs in 1 in 2,500 newborns in England, so not many people are aware of this condition and how it affects babies. We feel it is important to share our experience and in this way we hope to contribute to informing people, parents and healthcare professionals about the condition, concludes Brazier.
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