Ella is a sassy, cheeky, independent six-year-old but having cerebral palsy, hydrocephalus and epilepsy means life for mum, Kat, is more intense than most.
Having already experienced tragedy during her first pregnancy, Kat was closely monitored with Ella in the womb and monitored closely. But when she was born prematurely at 25 weeks, Ella had a brain bleed, which resulted in cerebral palsy and hydrocephalus.
“She’s fragile and totally reliant on all of this medical intervention to help her survive,” says Kat, explaining that in her six years, Ella has had 23 surgeries and is still in and out of hospital at least once a month for a check-up, or in the emergency room with a seizure.
“Hydrocephalus is known as water on the brain,” says Kat, “after Ella’s brain bleed, the clot blocked up the plumbing in her brain, and she developed hydrocephalus, which without intervention she would die. So they put a shunt in, which drains the fluid out into her abdomen and then the body naturally absorbs it.”
With the addition of son, Frankie in 2016, life in the Yearbury family is full-on. Though Frankie was born without any complications, Kat says she was “absolutely terrified the entire pregnancy. He’s my ray of sunshine, but I feel so guilty because he always comes second.”
Through all the love and support Kat offers her children, she does know how essential it is to make time to take care of herself. She is studying for her PhD in Arts as a Tool for Social Change, but says she has had so many suspensions because of Ella’s ongoing healthcare, that she’s still not graduated despite, having enrolled when she was pregnant with Ella in 2012.
Having the children’s Great Grandmother, Helena, live with Kat and the children is a massive help with the daily routine, and though Kat is separated from the children’s father Brett, he is always on hand with much-needed help. “Ella really misses him,” says Kat ‘he’s our family, so knows the rhythm and knows what’s expected and needed. He’s awesome with the kids.”
Ella has been attending Number 28 Early Childhood Centre since she was two and a half. “They’re incredible,” says Kat, “they’re hugely inclusive and have been such a huge support.”
But the realities of life’s situation mean Kat must always be nearby. Setting up her study room next door to the childcare centre, means Kat is able to be on call for Ella, and is often the first responder when an ambulance is required in case of a seizure.
“I’ve got a lot of practice to deal with it on the spot, it’s afterwards I just fall apart.” Kat runs on adrenaline and knows how to look after her daughter but has had some trouble looking after herself.
But despite all the challenges, Kat counts herself lucky to have Ella. Though she admits she is constantly worrying; “If something happened to her that was preventable,” Kat says, thinking of losing her beautiful girl, “that’s why I can’t really rest.”
Living with a daughter who relies on her so much has made Kat appreciate the little things in life. Kat is immensely proud of Ella and hopes her growing independence will continue to flourish into the future.