A young mother has revealed that doctors dismissed her concerns about her son’s oddly shaped head before realizing it was a medical emergency.
Brittany Bevans, 29, says her son Louie was born with a rare condition that could make him blind and have significant learning disabilities.
Despite knowing that something was wrong with her son “within weeks” of his birth, nothing could have prepared her for the truth or the treatment.
His skull would have to be ‘smashed’ in order to put it back together properly.
“It was overwhelming to think that my baby would have to undergo such a complex and risky procedure,” she said.
“The idea of his skull being cut open, dismembered, and reconstructed filled me with intense terror.”
Brittany knew there was a problem with the shape of Louie’s head, but she was fobbed off by her GP and pediatrician.
She then took her son to the craniofacial team at the Royal Children’s Hospital in Melbourne, where specialists revealed that he craniosynostosis, a condition that occurs when the bones in the skull fuse together too early.
Having her baby undergo surgery was Brittany’s biggest fear.
Brittany Bevans, 29, and her husband Daniel, 32, were distraught when their five-month-old son Louie (pictured) was diagnosed with craniosynostosis, a condition that occurs when the bones in the skull fuse too early
To treat the rare condition, Louie had to undergo cranial vault reconstruction, in which a surgeon cracked open his skull and pieced it together like a puzzle. Louie is pictured with his mother Brittany and father Daniel
“The constant worry took a toll on my mental health and two months after Louie was born, I was finally diagnosed with postpartum anxiety.
“This was undoubtedly the most challenging and difficult period of my life.”
She added that she became aware of his condition “shortly after he was born.”
“Despite our concerns being expressed, we were consistently told it was just a case of ‘Birth Head’.
Brittany from Melbourne (pictured with Louie) who works as a brand specialist, said she “knew” something was wrong with her son, but struggled to get a diagnosis before the doctors gave her the devastating news.
Louie, now one, was first diagnosed in December 2021, with the seven-hour surgery known as cranial vault reconstruction following in October 2022. His skull is pictured
“Unfortunately, the shape of his head did not improve over time and even seemed to deteriorate.
“Worries consumed me every day, and I constantly watched the shape of his head.
WHAT IS CRANIOSYNOSTOSIS?
Craniosynostosis is a skull problem that causes a baby to be born with or develop an abnormally shaped head.
It is rare and is estimated to affect one in 1,800 to 3,000 children. Three out of four cases affect boys.
The irregular skull shape in craniosynostosis can cause persistent headaches, learning difficulties, eye problems, and other symptoms.
Craniosynostosis is the result of the premature fusion of different parts of the skull.
This means that the skull cannot grow in the affected areas.
When one area of the skull is unable to grow, other areas can “overgrow” to compensate for and limit the pressure that develops around the brain.
“As I immersed myself in research into the condition, I realized how serious it can be if left untreated.
Craniosynostosis can lead to brain damage, blindness and intracranial pressure due to insufficient space in the skull for brain development.
“That’s why I felt it was crucial to advocate for Louie and other parents and children facing the same issue.
“If I hadn’t trusted my instincts and followed the doctors, I shudder to think what would have happened to Louie.
“This nagging doubt motivated me to seek answers and I’m so thankful I did.”
Louie received more than 60 stitches and two blood transfusions and had to stay in the hospital for five days to recover.
Louie, now one, was first diagnosed in December 2021, with the seven-hour surgery known as cranial vault reconstruction following in October 2022.
It involves surgeons making an incision across the top of the head from ear to ear, then pulling the skin and soft tissues across the forehead to expose the skull – before breaking them up and fitting them together like a puzzle.
Brittany said: ‘Louie is doing great now and has made a full recovery – he’s a super happy and energetic toddler!
“While he hit a few milestones a little later than usual, his body was focused on healing after major surgery, so we’re not too worried.
“That being said, we want to make sure we stay proactive and address any speech-related issues, which is why we will see a speech therapist.
“I’m so glad the surgery is over and Louie is doing so well now.
“I have to admit, though, that I’m a little more careful when Louie isn’t feeling his best.
Brittany says her mum’s instincts started long before Louie was diagnosed because she just ‘knew’ something was wrong, but she was reportedly fobbed off by her local GP and pediatrician
To help other parents, Brittany is now on a mission to bring more awareness to craniosynostosis through TikTok, where she has over 24,000 followers. Louie is in the picture
“But I think that’s just a mother’s natural instinct, and I don’t think it’s ever going to go away.
“In fact, going through this experience together as a family has shown us that we are capable of conquering anything. It’s a real source of strength for us now.”
To help other parents, Brittany is now on a mission to bring more awareness to craniosynostosis through TikTok, where she has over 24,000 followers.
She added, “As a parent, I have seen firsthand the lack of education and understanding surrounding this condition in the medical field.
“Through my TikTok platform, I have shared my son’s experience with craniosynostosis and received overwhelming support from other parents who have faced similar challenges.
Louie had to undergo cranial vault reconstruction, where a surgeon cracked open his skull and pieced it together like a puzzle – his scar is pictured
Louie is now a ‘happy toddler’ after the successful surgery
Brittany says she sees a “lack of education” around the condition in the medical field
Louie is now happily healthy and Brittany is dedicating her time to raising awareness
“However, I also see a common thread among these parents: They’re struggling to get a diagnosis and their concerns have been brushed aside by medical professionals.”
“I’m passionate about standing up for other parents and children facing similar challenges.”
“As a parent, there is nothing more important than seeing your child grow up happy and fulfilled.
Knowing that the surgery has given Louie the chance to live a normal life fills me with immense joy and gratitude.
“It’s such a relief to know he won’t have to struggle or suffer unnecessarily.
“I can’t wait to see all the great things Louie will accomplish when he grows up.”