Why We Exist

Angela and Shawn had never heard of Neurocritical Care before their baby Alivya was born. However, today, no one understands how crucial it is more than they do. What they now know is that as important as it is to save a child’s life, it’s just as vital to save a child’s quality of life.

Baby Alivya was delivered by emergency C-section. Everyone strained to hear her cry, to take a breath. But she didn’t. The delivery room staff at South Health Campus began working to resuscitate her.

“She came out looking white, which we’ve learned is one step worse than blue. It took at least a minute for the doctors and nurses to revive her,” says Angela.

At some point during labour, the placenta was damaged, which meant Alivya had been deprived of oxygen, though no one could say for how long exactly. Brain damage was a serious threat. Meanwhile, one of Alivya’s lungs also suffered damage during her difficult delivery. She was intubated so a ventilator could take over her breathing.

Knowing that time was of the essence, Alberta Children’s Hospital experts were called to South Health Campus so the specialized Neurocritical Care team could take over.

Before rushing her by ambulance to the Alberta Children’s Hospital, they swaddled Alivya in a hi-tech cooling blanket and placed her in a cooling chamber designed specifically for transporting babies like her. This would lower her body temperature with the aim of healing and preventing Hypoxic Ischemic Encephalopathy (HIE) – the resulting brain injury from lack of oxygen or blood flow to the brain. If it was done quickly, with her goal temperature maintained for 72 hours, it could mean the difference between a healthy and a damaged brain.

“We are amongst the first in Canada to use a cooling device while babies are in transport, even before they reach our NICU and the results have been very encouraging,” explains Neonatologist and NICU lead of the Neurocritical Care program, Dr. Khorshid Mohammad. “The program has cut the rate of permanent brain damage resulting from Hypoxia-ischemia in preterm infants by more than 50 percent through implementation of Neuroprotection care packages. The protocols we are developing along with the earliest possible introduction of our cooling and monitoring practices are helping to ensure more infants survive with fewer side effects down the road.”

Once she arrived at the Alberta Children’s Hospital, Alivya was settled into her room in the Edwards Family NICU where experts could begin around-the-clock surveillance, scrutinizing every vital sign and making minute-by-minute decisions about her condition in order to preserve her brain function. Video EEG monitoring was started right away.

“The EEG identified that Alivya was having subclinical seizures, or seizures that weren’t outwardly visible,” says Dr. Mohammad. “Had it not been for this technology, or our practice of continuous monitoring, these seizures most certainly would have been missed and Alivya would be in danger of secondary brain damage.”

Dr. Mohammad and his staff were able to intervene and control the seizures with medication. Alivya’s little body continued to be cooled and her brain was monitored for the next three days.

Angela and Shawn anxiously anticipated an MRI that would show the extent of the injury Alivya’s brain had suffered at birth. What would their daughter’s future look like?

“I will remember MRI day for the rest of my life,” says Angela. “Alivya’s doctors and nurses were beyond excited when they saw the results of the scan. They literally ran to our room to tell us the great news. ‘No evidence of brain injury!’ They were as excited as we were. Shawn and I just burst into tears of relief. Next to being given Alivya, herself, it was the best present we could have received.”

Angela and Shawn know the care their daughter received in the NICU was exceptional and not offered at all children’s hospitals. Today, they fully understand just what the words “Neurocritical Care” mean and what the highly-specialized program meant for their family.

When Angela learned Neurocritical Care is a program made possible by donations to the Alberta Children’s Hospital Foundation she was overwhelmed.

“If we lived anywhere else, our daughter’s story might have a different ending. We had a team of experts helping us to navigate a very scary situation. We didn’t have to do it alone. I can’t tell you what it means to Shawn and I that Alivya will have this team for as long as she needs them. There are no words to thank the generous people in our community who make this incredible standard of care possible.”

What We Do

Over the past decade, the severity of illnesses and the number of children who need the Alberta Children’s Hospital have risen dramatically. In fact, over that time, there has been a 37 percent increase in young patients, with 97,000 children requiring specialized care from the hospital last year alone.

Generous donations and research are helping to advance therapies and interventions. Yet many pediatric diseases and disorders remain a mystery and too many treatments still cause serious side effects. The Alberta Children’s Hospital is committed to reducing suffering for these children, teens and their families so they can achieve their highest potential.

Specialists at the hospital have prioritized several pivotal areas that promise to have a tremendous impact on the health of our children and our community including Brain Health, Innovative Research, Family Centred Care and Life-Saving, Life-Changing Care.

How We Do It

The generous support received by the Foundation from our many donors is a constant source of encouragement and hope to the patients, families and staff of the hospital. This funding serves to enhance not only the quality of health care, but also the quality of life for our children. These are just a few of the many initiatives underway to support healthy outcomes for children and youth in our community:

Neurodevelopmental Disorders

Neurodevelopmental disorders constitute one of the fastest growing health problems in the world, with 15-20% of school-aged children suffering from a diagnosable condition such as Autism Spectrum Disorder, Attention Deficit Disorder or Developmental Coordination Disorder. While programs exist with strength in either clinical care or scientific research, specialists at the Alberta Children’s Hospital and Alberta Children’s Hospital Research Institute are committed to bringing the two sides together. Community support is required to help the team build an integrated clinical and translational research system to:

• Develop new knowledge and therapies (i.e. zebrafish screening platform)
• Improve the family experience
• Enhance clinical care coordination

Pediatric Critical Care Transport

This year, more than 300 children from across southern Alberta and southeastern British Columbia will need the life-saving services of the Pediatric Critical Care Transport Team (PCCT). Too sick to be treated in their home communities, these critically-ill and injured children rely on our specialists to reach them day and night, all year round. Immediately upon arrival, the team begins timely expert interventions for their young patients that continue while they transport them safely to the Alberta Children’s Hospital where comprehensive emergency and intensive care are provided. Leveraging government support for the overall program, our community can help ensure that the hundreds of children who need PCCT each year will receive the best possible care. Community investment will fund:

• Specialized equipment and technology that meet Transport Canada guidelines.
• Crucial education and training – developed by and for PCCT experts.
• Pediatric education and skill development for other health care facilities

Childhood Cancer

For every five children diagnosed with cancer, one will not survive. Three will experience serious side effects from their treatment. And all five will suffer, as will their families. A core team of scientists at the Alberta Children’s Hospital Research Institute is focused on improving current therapies for those children and bringing new treatments to the clinical trial phase. Community support will enable them to advance work in promising areas such as:

• Immunotherapy-boosting a child’s own immune system to fight cancer
• Targeting cancer stem cells as a way to prevent the recurrence of aggressive cancers like glioblastoma
• Improving bone marrow transplant donor selection to reduce the incidence of graft-versus-host disease, post-transplant infections and relapse.

Rotary Flames House

Rotary Flames House is the only pediatric hospice in Alberta, and one of only six in Canada. Each year, the team of specialists at the House helps more than 100 families of children with complex, life-limiting illness – providing them with the physical, emotional, social and spiritual care they require. In addition to offering support during a child’s end-of-life journey, Rotary Flames House provides much-needed respite care – a special kind of temporary relief for families with children whose serious illness requires complicated, round-the-clock care. Respite care enables these families to rest and recharge while knowing their child’s care continues uninterrupted – a gift many of them say is invaluable. Community funding ensures that whether measured in years, months, weeks or days, Rotary Flames House can help make the most of every child’s life.

Family Care and Comfort

Once families learn of their child’s diagnosis, they often face a steep learning curve in understanding what lies ahead. They also face the challenge of meeting their child’s needs while balancing the practical realities of home and work. Community donations support a crucial Family and Community Resource Centre which provides immediate guidance with essential needs, connection to credible health and community resources, introduction to families with a similar experience and recreational toys and technology to help manage long hospital stays. Philanthropy also makes possible a special service called Emily’s Backyard – a supervised secure child-minding play area that engages patients and their siblings in structured play within a safe and caring environment. This service enables parents to devote their full attention to appointments with their child’s medical team.

Another important component of family care and comfort is Therapeutic Play. Recognizing that serious illness, injury and hospitalization can cause traumatic stress in young patients and families, community support makes possible a number of very special programs that help children cope with their experiences and express themselves in ways words cannot convey. Art therapy, music therapy and horticultural therapy enable children to enjoy interactive and hands-on activities that build self-esteem and creativity. A therapeutic clown and pet therapy are also family favourites for distraction and emotional healing.

What You Can Do

You have the power to save and change lives.  Every gift – big or small – provides hope, help and healing to the 97,000 children and families who rely on the Alberta Children’s Hospital each year. Your support is helping achieve excellence in care for families who are often in the midst of very challenging times.

To make a donation, connect about volunteer opportunities, or learn about other ways to help, click here…