Genesis loves to watch videos, sing and spend time with her family. One of her favourite activities in being in nature and listening to the songs of the birds chirping in the trees above.

Lately, it’s been a lot more difficult for this five-year-old to enjoy the things she loves. Genesis has cerebral palsy and microcephaly, a rare neurological condition in which an infant's head is significantly smaller than the heads of other children of the same age and sex. Both of Genesis’ hips are dislocated due to her cerebral palsy and she experiences daily, severe pain that impacts every aspect of her life as she continues to wait for more than a year for orthopaedic reconstructive surgery.

Genesis has been coming to Holland Bloorview since 2018, where she receives care from an integrated team of nurses and doctors as well as physiotherapy, occupational therapy and language therapy services. She has also been on a waitlist for gastric tube surgery for over a year, which her mother is hoping will address some of her ongoing feeding and weight loss challenges.

Wait times for orthopedic clinics and surgery were an issue before COVID-19 hit, but have been exacerbated even further by the pandemic.

Orthopedic issues in children with physical disabilities tend to progress over time. Once surgery is required, and the longer the issues are left untreated, the surgeries can become more complicated and may also be less effective,” says Dr. Darcy Fehlings, a developmental paediatrician at Holland Bloorview and a senior clinician scientist at the Bloorview Research Institute.

“Longer wait times also make it more difficult for caregivers to manage their child’s symptoms, including chronic and severe pain – in this case related to pain from chronic hip dislocation.” She adds there can also be “tremendous ongoing stress and mental health issues” associated with caring for a child with significant pain and the anxiety of not knowing when surgery will happen.  Longer wait times also continue to stress the healthcare system as families have no choice but to visit emergency departments and primary care providers for support and symptom relief.

 It’s a familiar story for Genesis’ mother Azucena. “We’ve had to rush to the emergency room because she is not able to lower her legs because they’re completely dislocated. She’s not eating or sleeping well. She’s crying a lot,” she says. “It affects me very deeply because she’s my daughter. It’s very devastating.”

Azucena has lost track of the number of times she’s needed to take her daughter to the emergency department to help manage her pain and feeding challenges. “They only give us (pain) medication. That doesn’t help a lot. I thought the surgery would be a lot sooner. I just don’t know how I’m going to cope if the surgery is going to be that far away,” she says.

Holland Bloorview, together with other members of the Children’s Health Coalition (CHC) are calling on political leaders and candidates to #MakeKidsCount as part of a bold new action plan for a children’s health system that is in need of care. Kids’ health needs to be made a priority and the CHC is asking candidates and leaders across the political spectrum to be committed to building an Ontario where children and youth have timely access to the care they need.

The plan calls for the next government to:

• Invest $1 billion over four years in the Make Kids Count Action Plan
• Convene a cross-sectoral children’s health summit with government, specialized children’s health care organizations, and health care providers to agree on principles for a long-term provincial Children’s Health Strategy
• Develop and release Ontario’s first-ever Children’s Health Strategy

“Every day matters in the life of a child when it comes to their health and development. Sadly, over the course of the pandemic we’ve seen children’s surgeries and rehabilitation services get repeatedly cancelled, meaning children are waiting longer in most cases than adults for the care they need,” says Julia Hanigsberg, President and CEO of Holland Bloorview Kids Rehabilitation Hospital. “A generation of children and youth will experience harm to their physical, developmental and mental health without immediate implementation of the Make Kids Count plan.”

Azucena says her entire family has been doing its best to manage—but it’s not easy. “My husband works to support our family and some days he isn’t able to work. It’s very overwhelming for my son as well. It affects us all on a day-to-day basis,” she says.

Azucena’s message to the next government? “There are countless children—we don’t know how many are out there—who have very complicated lives and who need these surgeries. It’s very hard to see your child suffer being on a waiting list and not being able to move. I just hope things get better.”  

To learn more about Children’s Health Coalition’s #MakeKidsCount action plan visit: https://www.chcontario.ca/