Two years in, Delijah Symonds doesn’t dwell on what caused her daughter to have a stroke at birth, she’s more concerned about why Bermuda doesn’t have a plan in place for Aryah and children like her.
The stroke damaged the toddler’s brain and caused cerebral palsy, a motor disability that makes talking and walking without support unlikely.
With that diagnosis came a multitude of health-related expenses and the understanding that the care that would give Aryah the chance to “thrive and excel in a school environment” was not available to her here.
Their only hope, Dame Marjorie Bean Hope Academy, provides “educational and therapeutic services for school-aged students with severe/profound multiple learning disabilities and complex care needs”, but two-year-old Aryah has another year before she can attend.
Meanwhile nurseries have said they cannot accommodate her without a medically trained paraeducator, a full-time nurse or a caregiver. It has left Ms Symonds unable to work, and dependent on social assistance.
“I never thought in a million years that this would be our reality here in Bermuda at this time,” the 28-year-old said. “I had a healthy pregnancy and unfortunately, the delivery process wasn’t the smoothest and it’s now changed our lives completely.”
Ninety-five per cent of Aryah’s care is in Boston, Massachusetts, where she travels for check-ups every six months.
The mobile phone Ms Symonds carries isn’t a luxury. She needs it so she can have ready access to her daughter’s paediatric neurologist and her aerodigestive team, her nutritionists, her pulmonary team and her gastroenterologist. Meanwhile the big-ticket expenses are never ending.
A standing frame that specialists recommend so that Aryah is able to “maintain her hip posture so that she doesn’t suffer from hip dysplasia” costs roughly $20,000; a gait trainer is almost $9,000; an adaptable supportive bath seat, nearly $2,000. The stroller Aryah is using came with a price tag of $8,600.
The health insurance Aryah gets through her father, Tre’ Govia, covers 80 per cent of any equipment they can afford.
For all else Aryah must rely on the kindness of the community, or go without.
The Committee of 25 has provided “incredible” support both financially and emotionally. Ms Symonds is also grateful for help received from The Coalition for the Protection of Children and Aryah’s paediatrician Kristen Woodward of Edgewood Paediatric Services.
“Aryah was born unresponsive and Dr Woodward made sure we had an alive baby. She’s just been incredible for us. And so I can’t act like there’s no support here, but it’s minimal and I feel [Bermuda] should just be more equipped. People need to be able to work and we should have facilities available [for children] so that we can use them.”
Ms Symonds has turned down five job offers in the past year because there isn’t a school for her daughter.
“It shouldn’t have to be where you have to leave Bermuda to go and get the resources that you need. I shouldn’t have to feel like I need to move to another country so that my daughter can have her best opportunities at life.”
On discovering SMILE Therapy for Kids, an intensive programme in Canada, she started a GoFundMe page and was thrilled when Lindsay Simmons, the Progressive Labour Party senator, came on board with a fundraising drink available from Rosa’s, the Tex-Mex restaurant on Front Street.
“[SMILE Therapy is] a multidisciplinary clinic specialising in treating developmental delays in children. Early intervention is key. The plasticity of the brain between the ages of zero and five and how it can rewire and really try and compensate for the areas damaged, is why we need therapy now, every single day,” Ms Symonds said.
“But unfortunately, as an island, we just aren’t equipped to have those services every day. There’s a shortage of therapists, there’s a shortage of paediatric therapists really. And so we’re just trying to do whatever we can do as a family to maximise her potential and her development.”
Aryah’s health diagnosis came after “a mishap of delivery”.
Meconium, the stool a baby usually passes soon after birth, was found as Ms Symonds was prepared for her C-section. Babies sometimes pass meconium while in the uterus if they are under stress due to a decrease in blood and oxygen supply.
“Meconium can be really detrimental to your child’s health,” Ms Symonds said. “I believe action should have been done sooner, once they discovered the meconium, which could have led to a different outcome for Aryah.”
Aryah was born with low sugar and low oxygen and spent five days in the neonatal intensive care unit while doctors monitored her.
All seemed fine until about four months later when Ms Symonds noticed her daughter moving oddly.
“Her paediatrician got us an EEG, which then confirmed that it was an infantile spasm and while we were there she said, ‘Let’s do an MRI.’”
The MRI was sent to Aryah’s paediatric neurologist in Boston. Only then was it discovered that she had suffered a stroke at birth and that there was severe damage to her brain.
“You can see based on that initial cranial ultrasound taken on the date of birth, that there were some abnormalities in there that would have indicated some kind of trauma,” Ms Symonds said.
“So she has no motor cortex [the part of the brain that generates signals that tell the body how to move]. There’s about 25 per cent to 30 per cent of her brain that was completely destroyed from the stroke.”
The damage is what is preventing her from attending school.
“She has cerebral palsy and a feeding tube. Obviously not every nursery has a nurse or someone that’s medically trained, and so that’s why it becomes difficult for her to go to school,” Ms Symonds said. “It’s really sad that as an island we just don’t have a facility for kids like Aryah at her age. Disability doesn’t have an age. So the next step is, what’s the alternative?”
Tree Tops preschool has offered Aryah a spot for September.
“The benefits of being around other kids – she’s very motivated, very happy, very determined. There’s endless benefits of her being in that school setting so I’m eager to get the resources necessary so that that can be her reality.”
The only concern is the cost of the medical professional that must accompany her. Ms Symonds hopes that the government will foot the bill.
“This is what I’m trying to do, because I feel like if you don’t have a school for her then help us provide her with the resources necessary for her to go to school.
“It seems there has been a lack of resources for our disabled community for years. Bermuda has such a low birth rate it seems like it doesn’t happen often, but the point is that it happens in our country and we should be prepared for that and be able to have care for our young people. Anybody that is in early education would tell you that zero to five is the most important time of a child’s development.”
While it was difficult “trying to digest and process” Aryah’s health diagnosis” Ms Symonds is upbeat about her daughter’s situation and has become an advocate for disabled people here.
“I know in my heart that there’s other plans for her life,” she said. “Many people don’t know what cerebral palsy is – a congenital disorder of movement, muscle tone or posture due to abnormal brain development. A lot of people don’t know about meconium and what that can do.
“With the GoFundMe there are people who say, ‘Sorry, I can’t financially contribute’ but it’s not even just about that. Awareness is key. Sharing our story is just as valuable as a financial donation.”
For more on Aryah Rose’s CP Journey visit bit.ly/3KKvCpD