TikToker Audrey (@audreykandil) is a stay-at-home mom to a medically complex child. She and her husband both have medical backgrounds, which makes caretaking easier and harder at the same time. Her husband is a doctor, and she worked in the hospital as a pediatric cardiac MRI tech.
Her son was diagnosed with a very rare condition called cerebrocostomandibular syndrome (CCMS). It affects the jaw and ribs, leading to severe feeding and breathing difficulties.
Her son is one of 110 known cases worldwide since the 1970s. “Cerebro” refers to the brain, “costo” is the ribs, and “mandibular” is the jaw.
“Really, not a lot of research, and even with that being said, cases range,” said Audrey. “So, some kids don’t have as many symptoms, and some kids have a lot of symptoms.”
“In Rami’s case, he was born with his jaw pushed back, basically blocking his airway completely, so he actually wouldn’t even be able to get an intubation tube in his trachea.”
Her son had a tracheostomy tube inserted into his windpipe while he was still attached to Audrey’s placenta. He doesn’t have any issues with his brain, except for a little extra axial fluid, but the doctors don’t think that it will affect him.
As for his ribs, he only has seven on the left side of his body and eight on the right side. People typically are supposed to have 12 ribs on each side.
His ribs are spaced apart differently. Some are really close together, and others are far apart, resulting in big gaps.
He is still on a ventilator to try to fully inflate his lungs so that musculature will form around them and prevent restrictive lung disease later in life.
Sign up for Chip Chick’s newsletter and get stories like this delivered to your inbox.
Since Audrey’s husband is a doctor, he is able to re-explain everything going on with their son and catch her up on information she might have missed because he already understands all the medical terminology.
But when Rami is coding, Audrey is the one who takes the lead and jumps into action. Her husband has run many different codes at work, but when it comes to his own son, he gets nervous and freezes up.
In the comments section, many parents of medically complex children felt seen and understood. They also shared their own children’s conditions.
“I have two kids with two different, unrelated rare diseases. We are the strongest moms!” commented one user.
“My sweet boy has had many jaw distraction surgeries! He is nine and is doing so well! He has Goldenhar syndrome, is in third grade, and is doing really well! Still has his trach, but doing really well!” exclaimed another.
“My daughter is four, and she also has CCMS. The first case born with absolutely no ribs!” added a third.
By Emily Chan
Emily Chan is a writer who covers lifestyle and news content. She graduated from Michigan State University with a degree in... More about Emily Chan
