Six years ago, Giulia Lake gave birth to her daughter, Téa, and knew nothing of the Zika virus. By 2015, as thousands of Brazilian babies were born with smaller-than-average heads due to microcephaly – a condition linked to the virus – she could only empathise. Téa had been diagnosed with a similar but much more severe and rare neurodevelopment disorder called microcephaly-capillary malformation syndrome for which there is no known cure.
Téa averages 20 seizures a day, sometimes over 40, and they continue throughout the night like clockwork – 10pm, 2am and 4am – each one lasting between 10 and 15 minutes.
“They just didn’t know,” Giulia says. “They basically had a meeting with us and gave us all the options that might be out there. So we kind of knew that severe disability was on the cards.”
Looking back, Giulia suspects Téa’s health issues began in the womb. She says a 23-week scan depicted Téa’s head to be disproportionately small, but she recalls no concerns being raised or follow-ups requested. At the same time, she felt continual rhythmic movements in her belly. “I thought Téa was having hiccups which, in hindsight, were probably seizures.”
Since her birth, Giulia says Téa averages 20 seizures a day, sometimes over 40, and they continue throughout the night like clockwork – 10pm, 2am and 4am – each one lasting between 10 and 15 minutes. “I’m not entirely certain if she’s actually awake during the seizure, but she’s asleep when it starts and asleep when it finishes.” Giulia concedes the triggers continue to remain a mystery.
The source of Téa’s issues puzzled doctors until her dermatologist chanced upon a newsletter, detailing a study carried out by a Washington doctor on children with symptoms mirroring Téa’s; specifically a head circumference less than the first percentile, numerous tiny red birthmarks and epilepsy.
Giulia’s little girl is also afflicted with profound intellectual delay, resulting in an inability to walk or speak. Confined to a wheelchair, she has no control over her hands so cannot perform sign language, but will soon begin a trial to learn to communicate with her feet. Tests conclude Téa is vision impaired, able to distinguish only shadows and lights. She struggles to swallow so meals are fed into a percutaneous endoscopic gastrostomy (PEG) tube attached to her stomach, in which medications are also directly injected.
To correct her scoliosis, Téa wears a ‘secondskin’ – a garment which is rigid around her torso ensuring she remains upright with her lungs open. Recurrent pneumonia and aspirations have resulted in lung disease and a constant patchy left lung. Her epilepsy is controlled as best as possible with diet and a variety of drugs. With “a mini ICU going on” in their home, the Lakes avoid transporting Téa to hospital where possible, as it’s paramount to keep her delicate respiratory system free from infection.
Confined to a wheelchair, she has no control over her hands so cannot perform sign language, but will soon begin a trial to learn to communicate with her feet.
Data compiled on all Téa’s health challenges and forwarded to America prior to her first birthday, confirmed a diagnosis of microcephaly-capillary malformation. The condition is so rare, only 12 cases have been reported globally and Téa is believed to be the only child in Australia who suffers from it. The study also revealed the cause of the condition to be genetic. Subsequent blood tests indicate both Giulia and her husband Danny carry a mutated gene. “There’s nothing that connects us in any way so it’s just a random throw of the dice,” Giulia sighs. Their decision to have more children hinged on this information and she reflects sadly on the consequences.
Told there is a one in four chance of future children inheriting the condition, Giulia says, “[It’s] not good odds. I don’t think I’d be able to terminate but then at the same time I wouldn’t willingly do that to another child … I wouldn’t want another child to go through what she does every day.”
Téa requires 24-hour care and Giulia says she and Danny only stopped floundering when they discovered other parents in the same situation.
“Being around people who knew exactly what we were going through, that kind of got us to the point where we’re okay with it. When you’re first in that position you feel like you’re completely alone because you look around and see ‘normal’ people, ‘normal’ families going about their business.”
She admits it took her six months and an encounter with another mother with a special needs child to come to terms with the tangent her life had taken. “It was pretty much at that point that I thought, she’s surviving, she’s getting on with life and her life is still relatively normal. It’s terrifying at the start because you’ve got no idea. You just manage. Fall into your routine. It just turns into ‘normal’.”
Movies, shows, parks and shopping; Giulia ensures Téa experiences everything, although being cuddled by her family is her favourite thing to do. “She’s cheeky. She’s really beautiful,” Giulia says with pride, but is aware outings tend to highlight her differences. She is more relaxed when Téa is in the hospital ward or at gatherings surrounded by children with similar issues.
“It’s hard because Téa is a palliative patient. She’s part of end of life care now… Now everything that is done for her is purely for comfort.”
“It’s nice because you can kinda plonk them down together and they touch hands and make little noises to each other. It’s really cute. All the parents understand what’s going on.” She pauses and adds quietly, “Your kid’s not the weird one.”
Giulia credits Danny, her stepson Jamie, her parents and close friends for providing much-needed assistance.
“My parents are very supportive. They can both care for Téa [just] as well as us,” Giulia says and adds, “I’ve got a friend I’ve managed to quietly train up, so she’s looked after Téa a couple of times as well. It’s not easy for someone not used to doing that.” She insists she and Danny have had to become stronger or risk “falling in a heap”.
Giulia knows of four other children from overseas who have passed away in recent years from complications related to this condition. She explains that generally it is respiratory problems that ultimately claim them so is adamant they live in a warm climate. Currently the oldest child living with the condition is eight years old, only two years older than Téa. This causes Giulia angst which is why she prefers to focus on the present and is reluctant to plan too far ahead.
“It’s hard because Téa is a palliative patient. She’s part of end of life care now, with the hospital. Now everything that is done for her is purely for comfort.” Giulia stresses Téa will not be subjected to invasive, painful or uncomfortable tests and procedures that provide no obvious benefit to her wellbeing. “We just want quality of life, that’s all.”