A mom recalled the excruciating moment doctors had to interrupt her baby son’s skull into pieces as a result of a rare birth defect.
Brittany Bevans, 29, was told that her boy would must have major surgery so as to save his eyesight and help with seizures.
Louie was just 5 months old when he was diagnosed with craniosynostosis — a condition that happens when the bones in a baby’s skull join together before the brain is fully formed.
Based on the Centers for Disease Control and Prevention, the rare birth defect affects about one in every 2,500 births.
“It was my biggest fear,” Bevans told NeedToKnow.co.uk Monday. “It was overwhelming to contemplate that my baby would must undergo such a posh and dangerous procedure.”
Louie was diagnosed with the condition in December 2021 — but Bevans’ maternal instincts told her something was unsuitable long beforehand, despite the fact that her concerns weren’t taken seriously by a pediatrician.
“We first became aware of a problem with the form of Louie’s head shortly after his birth,” she said of the fears she and husband, Daniel, 32, experienced. “Despite our concerns being raised, we were consistently told that it was simply a case of ‘birth head.’ Unfortunately, over time, his head shape didn’t improve and in truth appeared to worsen.”
The family live in Australia, and a concerned Bevans subsequently took her son to the craniofacial team on the Royal Children’s Hospital in Melbourne.
“The fear consumed me every single day, and I continuously examined the form of his head,” Bevans admitted. “As I delved into research on the condition, I noticed how serious it may very well be if left untreated.”
Without surgical intervention, craniosynostosis can result in brain damage, developmental delays, blindness, cognitive impairment, seizures and headaches, in keeping with the Mayo Clinic.
“This is the reason I felt it was crucial to advocate for Louie and other parents and kids facing the identical issue. If I hadn’t trusted my instincts and followed up with doctors, I shudder to think what may need happened to Louie,” Bevans said. “These nagging doubts motivated me to hunt answers and I’m so grateful that I did.”
Sure enough, little Louie was diagnosed with craniosynostosis, with doctors saying he would wish a cranial vault reconstruction.
The intense seven-hour operation took place in October last 12 months.
In cranial vault reconstruction, doctors make an incision along the newborn’s scalp, remove the affected bone, and reshape and replace the bone to enhance head shape and permit extra space for the developing brain, in keeping with Johns Hopkins Medicine.
“The concept of his skull being cut open, broken apart and reconstructed filled me with intense anxiety. The constant worry took a toll on my mental health and two months after Louie was born, I used to be eventually diagnosed with postnatal anxiety,” Bevans shared. “This was undoubtedly probably the most difficult and difficult period of my life.”
Louie received over 60 stitches and two blood transfusions and stayed within the hospital for five days for recovery. Thankfully, he has made a full recovery and is “doing great” seven months on from the procedure.
“He’s a brilliant glad and energetic toddler!” Bevans revealed. “While he could have hit a couple of milestones a bit later than usual, his body was focused on healing after a significant surgery, so we’re not too concerned.
“That being said, we wish to make certain we stay proactive and address any potential speech-related issues, which is why we’ll be visiting a speech therapist,” she added.
Bevans admits that she’s extra cautious when her son isn’t feeling his best, but she chalks that as much as natural motherly instinct.
Bevans desires to help inform other parents about craniosynostosis through her TikTok account where she has 24,300 followers and 1.1 million likes.
“As a parent, I even have seen first-hand the dearth of education and understanding surrounding this condition throughout the medical field,” she said. “Through my TikTok platform, I even have shared my son’s experience with craniosynostosis, and I even have received overwhelming support from other parents who’ve faced similar challenges.”
