A mum has revealed her new born daughter was born with a ‘permanent smile’ and is now sharing the family’s life journey on TikTok to raise awareness about the rare condition the baby has.
Cristina Vercher, 21, and her husband Blaize Mucha, 20, from Adelaide, Australia, welcomed their daughter Ayla Summer Mucha in December 2021.
During the C-section birth they were given the shock news that her mouth had not formed as ‘normal’.
When doctors handed Ayla Summer Mucha to her parents, they noticed that she had a large oral opening, which initially baffled doctors as it had not been picked up on her ultrasound scans.
The baby, had developed bilateral macrostomia, a rare condition where the corners of the mouth don’t fuse together during pregnancy.
According to a study from 2007, only 14 cases of the condition have been reported in medical literature. The condition is so rare that this was the first time doctors at the Flinder’s Medical Centre had seen such a case.
‘A caesarean is an uncomfortable experience as it is,’ Cristina Vercher, the mum told Jam Press.
‘Therefore, I was already in an overwhelmed state. As you would know during the surgery the doctors will show you the baby once it has been removed from the uterus.
‘At the time it was a very obvious formation as Ayla was so tiny. We were instantly worried. Blaize and I were not aware of this condition nor had I ever met someone born with a macrostomia. So it came as a huge shock.’
‘This made the experience all the more worrying as it took several hours for a doctor to give us an answer,’ Christina said.
‘With this came more difficulties as the hospital had little knowledge or support for such a rare condition. All I could think about as a mother was where I went wrong, especially when I had been so pedantic throughout my entire pregnancy.
‘Yet her father and I had been reassured by multiple doctors after days of genetic testing and scans that this condition was entirely out of our control and was of no fault of our own.’
Infants with the condition can struggle with more functional tasks like latching and suckling.
Patients with Alya’s condition are advised to have surgery to help ensure they have a functioning mouth as they grow older.
‘We are yet to receive the exact specifications of the surgery, yet we know this involves a skin closure that results in minimal scarring,’ The mum said.
‘The challenges we will face post surgery are worrying as a couple.’
On TikTok, a clip of the mum dressing her daughter has received over 46 million views, with users flooding the comments section with support.
Speaking about her experience of sharing her family’s life on social media, Cristina added: ‘I would advise nothing more than to be kind and accepting of all people.
‘As you would hope people paid the same respect to your or your children if such events were to occur in your life.
‘Conditions such as this could happen to anyone at any time. Social media is a divided place. You can’t control the personalities of other people unfortunately.
‘Yet Blaize and I have received just as much love and support as negative comments.
‘I am thankful we left the video posted as I have spoken to a number of mothers going through similar experiences.
‘We will not stop sharing our experiences and favourite memories as we are so proud.’