Suffering in the shadows

Parents of medically complex children say life is a never-ending fight for help.

By Jessica Singer, CBC News June 3, 2024

Jordan Stead gently holds her three-year-old daughter’s arms and whispers encouragements in her ear, as she helps her move her small, unsteady legs one step at a time.

It’s a big deal when Ebba learns a new skill. Every time she gets sick, her strength deteriorates.

Ebba has a rare neurodevelopmental condition called CDKL5 deficiency disorder. She is prone to vomiting spells and seizures and is fed through a tube. Her big blue eyes, behind little pink glasses, can see only colours and familiar shapes, but she can recognize her parents and her two older siblings.

“She is not less of a child because of her disorder,” said Stead. But because of her disorder, a lack of resources can often keep Ebba behind.

Parents of medically complex children say life can feel like a never-ending fight for help, filled with tasks that go beyond typical parenting duties.

It’s leaving families emotionally, physically and financially distraught.

“I worry about what happens to Ebba when we’re not here,” said Stead, sitting beside her husband, Theo Coombs, at their home in St. John’s.

“I can’t let my mind go there.”

The Canadian Institute for Health Information says medically complex children share key characteristics, such as having complex chronic conditions, functional limitations, and high health-care and caregiving needs.

In a 2020 report, CIHI found almost one per cent of children and youth in Canada were medically complex. The report says these children account for over one-third of hospital stays among all children and youth 24 years and under.

In 2015-16, Newfoundland and Labrador had the highest rate of medical complexity among children nationally, according to CIHI.

CIHI’s latest available data shows that the province has the second highest rate of medically complex children in the country: just over 38 per cent more than the national average.

Children’s Healthcare Canada, which represents child health-care organizations across the country, released a report in early May calling on the federal government to address what it calls a “crisis in child and youth health.”

Health-care organizations across the country are facing unprecedented demand and there’s a national shortage of health-care professionals trained to care for children specifically, says Emily Gruenwoldt, the president of Children’s Healthcare Canada.

This has a compounding effect on medically complex children, she says, since they have to avail of many care providers in a variety of settings, from medical specialists to respite workers.

“It puts parents in a really difficult position of essentially general contracting their own child’s health-care services,” said Gruenwoldt.

“They become the expert in their child’s care and they find themselves often having to repeat the same experiences or sharing the same concerns over and over and over again.”

WATCH | Get an inside look into the unseen struggles of caring for medically fragile children CBC

Stead and her husband both work full time, and because of their finances, they don’t qualify for any support through Newfoundland and Labrador’s special child welfare allowance program.

Stead and Coombs estimate they pay around $40,000 a year for Ebba’s caregivers, medical supplies and a variety of other costs.

The costs impact how much the family is able to save for retirement, as well as their children’s futures.

“Our government supposedly prides itself on social programs and social assistance, but it’s not consistent and it’s not given to everyone,” said Coombs.

“Ebba has a mutation that’s one amino acid different than our other children,” said Stead. “That minor difference in her DNA means that we have this huge expense, and it feels really unfair,” said Stead.

Constant advocacy

Ebba is fed formula through a tube and takes medications, including three different anti-epileptic medications, around eight times a day. Her seizures come in cycles, says Stead, and can often happen at night.

Ebba also has gastrointestinal issues, Stead says, so ensuring she has adequate caloric intake is a precise science.

Caring for medically complex children means undertaking tasks that go beyond typical parenting duties.

“Once you have that in your life, you can never sleep the same,” said Stead.

“It’s really on a parent to learn as much as you can about the disorder and the things that could happen.”

Ebba with her older sister, Kaia. Submitted by Jordan Stead.	Ebba is still learning how to take assisted steps. Submitted by Jordan Stead.	Ebba with her siblings Avery, left, and Kaia, right. Submitted by Jordan Stead.

Stead says finding caregivers to alleviate the burden, which also falls into parents’ laps, is a “nightmare.”

Stead says she and her husband have tried to get Ebba into a daycare centre, but Ebba needs an inclusion worker with her at all times to assist with her medical needs.

Ebba has been on a waitlist for a daycare space since the day she was born, says Stead. The family has called every daycare feasible for Ebba to attend, and along with the fact that all centres had very long waitlists, only one had an inclusion worker.

Stead says advocating with government officials for child care and inclusion support led nowhere. She also couldn’t find anyone locally she could afford.

You feel torn no matter what. Gillian Lye

The family has been relying on au pairs or caregivers from outside the country to live with them full time, but they stay for only a fixed amount of time.

When an au pair leaves to take another opportunity, it can take months to fill the gap. The family has been left without help several times.

In October, the provincial citizens’ representative released a report with recommendations to the provincial government to improve care for medically fragile children, including providing respite care based on the needs of the child instead of a family’s finances.

Health Minister Tom Osborne told CBC News the provincial government is working to address the recommendations in the report, and said a “special advisor” has been appointed to meet regularly with the Office of the Citizens’ Representative.

Although Stead currently has support from an au pair, she says she wants Ebba to go to school at Rennie’s River Elementary with her siblings. However, the school isn’t accessible.

Although school administration has been helpful, says Stead, they told her she would have to lobby government ministers or the premier, because making the school accessible isn’t within its purview.

“On top of everything that you do all day to care for your child and to try and give them the best change, then you have stuff like that thrown at you,” she said.

“It’s disheartening that in 2024 I have to fight for my child to have education and to have care.”

A similar story

Gillian and Jason Lye’s 14-year-old daughter, Jordan, also has CDKL5.

Jordan is non-verbal, has gastrointestinal issues and is fed through a tube. For much of her life, she’s had seizures almost every night.

“You wake up in the morning and you never have any idea of what you’re going to get,” said Jason Lye, sitting beside his wife in their home in Logy Bay-Middle Cove-Outer Cove, just outside St. John’s.

The Lyes say they didn’t apply for the special child welfare allowance because it’s a long, invasive process, and they knew they wouldn’t qualify due to the family’s income.

Gillian Lye says she left her job as a registered dietician to help take care of Jordan and their three other children, but finding a caregiver to help alleviate the burden has been a challenge.

Since they don’t qualify for support, the Lyes have to hire their own caregivers. Finding someone in the province who’s qualified to tend to Jordan’s complex needs is difficult, and within the last 14 years, the couple says they’ve cycled through almost 10 caregivers.

They say it’s not feasible to hire someone full time, so their current caregiver is with Jordan only around 15 hours a week.

“Even without a child with complex needs, you always feel a sense of guilt, like you’re not being able to give everything to each child. But when you have a child that demands a hundred per cent attention, it kind of makes that guilt even worse,” said Gillian Lye.

“You feel torn no matter what.”

On top of paying for respite care, which the Lyes say is about $1,000 a month, the family also has to front the cost of things such as diapers and tube feeding supplies, which they estimate costs about $800 a month.

Jason Lye says they recently had to convert a minivan to make it wheelchair-accessible, which costs around $38,000, in $800 monthly instalments.

“When I talk to other parents of children with complex needs, I think everybody finds it exhausting, having to try to advocate for every single thing in every single service,” said Gillian Lye.

“The unfortunate part is at the end of the day, sometimes you’re just too tired to do it,” said Jason Lye.

Fear for the future

Jordan, right, hugs her younger sister, Nora. Submitted by Gillian Lye.	Jordan recently transitioned from elementary school into junior high. Submitted by Gillian Lye.	Jordan, left, with her five-year-old brother, Lincoln. Submitted by Gillian Lye.

The Lyes worry about what will happen to Jordan as she gets older. There are limited programs in the province that help adults with disabilities socialize, and the couple fears a respite worker shortage could leave Jordan without adequate care.

“She can’t advocate for herself. She can’t tell us what she wants. So we have to try and do what we think is in the best interest of her,” says Gillian Lye.

Stead and Coombs says the emotional burden faced by parents of medically complex children often goes unseen. Although the couple have availed of mental health support through private insurance, they say it took three years for them to get Ebba’s brother and sister into a workshop for siblings of disabled children.

Gruenwoldt says Canada spends only about 1.7 per cent of its GDP on policies and programs for children. Many other countries, including most Scandinavian countries spend much more, she said.

She says the federal government needs to establish a national children’s strategy and designate a chief child health officer whose mandate focuses on child and youth well-being.

“We’re expecting another 1.5 million children by 2040,” said Gruenwoldt. “If we can’t meet the needs of kids today, how are we going to begin to meet the needs of them in the future?”

Stead says she’s discouraged when she hears about the experiences of families with older children who are medically complex. But she’s too busy and overwhelmed to think about the future. All the family can do is take things one step at a time.

“For all of the challenges that Ebba has brought, she has made our life better. You have a deeper appreciation of things when you have a child with needs like hers,” she said.

“She’s a very special child, and I think that’s what keeps us going.”

About the Author

Jessica Singer is a journalist with CBC Newfoundland and Labrador. She has worked in CBC newsrooms in Toronto and St. John’s. You can reach her at jessica.singer@cbc.ca

Source CBC Newfoundland and Labrador