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Alivya's story

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.

Angela remembers hearing the urgency in her doctor’s voice. “We have to deliver her now! This baby is crashing.”

Before Angela and Shawn could fully understand what was happening, 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 Alivya.

“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. I am actually relieved that I was unconscious because I can only imagine how long that minute would have felt,” says Angela.

At some point during Angela’s 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.

“It was as if the moment she could breathe easier, she became mad at the ordeal of her birth. She kept trying to pull out her breathing tube. Shawn and I just looked at each other and thought “Ok, good. We’ve got a fighter on our hands,” recalls Angela.

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 immediately 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.

Alivya NCC cooling blanket“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.

“It was painful to be separated from Alivya, but I knew she was exactly where she needed to be,” says Angela who was still recovering from her C-section at South Health Campus. “Shawn travelled between hospitals, visiting both of us. He and the NICU nurses did everything they could to make me part of Alivya’s care. One nurse even suggested that they put one of my t-shirts in her isolette so she’d know my smell.”

Alivya was four days old when Angela was discharged from her own hospital bed and made her way straight to the Alberta Children’s Hospital to join her baby daughter.

“From the second I walked into the NICU I was struck by the feeling of being in a very special place,” says Angela. “Alivya was hooked up to so many wires and tubes it seemed impossible that I’d ever be able to hold her. Even though it took a good while for two nurses to get her into my arms, they were determined to make it happen and that meant everything to us.”

Days in the NICU passed like months as Angela and Shawn anxiously anticipated the day an MRI 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. Of course, Alivya took it all in stride, as if she knew all along she’d be alright. She just gave us the biggest smile. And it really was an actual smile. Even her doctor agreed it wasn’t gas!”

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.

“Being separated during those first few days really drove home the possibility that we could have lost Alivya,” says Angela. “We know that research and medical strategy were behind everything they did for Alivya. But what it really boiled down to for us was love. How do you become that caring, or compassionate, or smart without love in your heart for these babies and families. That’s what truly got us all through.”

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.”

alivya swing

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