Aaron Chalmers and Talia Oatway’s first welcomed their little baby boy back in August of last year, but the tot has needing a lot of medical attention due to a rare condition he was born with.
Talia has since opened up about the 'toughest seven months' of her life after finding out that her youngest child, Oakley, would need surgery for the next 18-24 months after being diagnosed with Apert Syndrome.
And it seems that many people have never heard of the medical condition before.
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Talia, 31, who was in a relationship with Geordie Shore star Aaron Chalmers, first revealed the news when she introduced her son to her 372,000 Instagram followers.
In August 2022, Aaron took to his Instagram Stories to tell fans that they had welcomed Oakley into the world but he would need surgery for up to the next two years.
He said: "Unfortunately, there's been a few issues with the baby.
"We were in fetal medicine for most of the pregnancy, then we got cleared, unfortunately it wasn't cleared, and it wasn't picked up on the scans," he continued, "So, the little bubba is probably going to be in and out of surgery for the next 18 months to 24 months, so just me and Talia are coming to terms with everything."
The genetic disorder is caused by mutation on a specific gene and predominantly affects the skull and face, as well as the hands and feet, and causes the bones in these particular areas to fuse prematurely in the womb.
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According to the official Boston Children's Hospital website, Apert syndrome, also known as acrocephalosyndactyly, is: "A genetic disorder that causes fusion of the skull, hands, and feet bones.
"It is characterised by deformities of the skull, face, teeth, and limbs. Apert syndrome occurs in one out of every 65,000 to 88,000 births."
One of the biggest symptoms of Apert syndrome is syndactyly, which the medical professionals explain is a condition where a child's fingers are 'webbed or conjoined'.
"With Apert syndrome, the severity of syndactyly means your child’s fingers might not bend completely even after being separated, and their thumbs may be short and unable to bend well," the website reads.
A child with Apert syndrome may also typically display a 'tall skull and high prominent forehead', 'underdeveloped upper jaw', 'fused toes' and 'slower mental development due to the abnormal growth of the skull'.
While doctors don't know for certain the 'exact' cause of the condition, many experts do believe it may be 'the result of a mutation in a gene called fibroblast growth factor receptor 2 or FGFR2'.
The website explains that FGFR2 plays an important role in bone growth and the mutation occurs early in a pregnancy.
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Talia has since documented her journey with Oakley on Instagram, telling her fans: "It has been the toughest 7 months of my entire life. I have been thrown into a medical world, with no forewarning, no time to prepare.
"Only now I feel like I’m coming to terms everything, finally coping with how I’m feeling, embracing our new normal.
"This is my beautiful son Oakley Bleu, he was born with a rare genetic syndrome called Apert Syndrome."
The mother went on to say that her baby boy 'has a long road ahead' before adding: "This is a lifelong journey and it isn’t going to be easy.
"But my boy, you have shown me how strong you are! You are brave and determined and I love you more than you’ll ever know."
She has also said she hopes through sharing her journey that she can 'raise awareness and support other medical families'.
"I'm so proud of this boy, he has shown me nothing in this world matters but health and love," Talia continued. "It has taken me a long time to get where I am but finally I’m starting to feel happy again. Son, you have two amazing brothers and an amazing big sister behind you.
"We have absolutely everything we need. Let’s do this."
Rhiannon Ingle