Lylah’s Family Story

Lukas Oszust was born on August 15, 2011, with hypoplastic left heart syndrome. The left side of his heart was not fully formed and would never work to capacity. Lukas was airlifted to the Stollery Children’s Hospital at five days old and underwent his first open heart surgery. With his heart in full failure, Lukas was placed on a high-level infant life support called ECMO. While on ECMO, Lukas developed a large clot that travelled to his brain, causing a massive stroke and permanent neurological damage.

Unfortunately, Lukas’s neurological damage meant that he would never qualify for a transplant. The Oszust family was truly living on borrowed time with their sweet baby boy. Days turned to weeks turned to months as Lukas’s medical team worked for his survival. The family was given no hope of Lukas seeing his first birthday, much less ever being well enough to go home. Lukas had other plans. On August 15, 2012, Lukas celebrated his first birthday, and on December 2, 2012, Lukas and his family went home.

The return home was not as easy as anticipated. The family was returning to their community after being in hospital for almost a year and a half. The Oszusts returned to their former life with a new normal: a baby boy who needed around-the-clock care. Despite the loneliness of settling back into a life with a new normal, the Oszust family began their life together as a family.

In December 2013, Lukas developed a systemic infection in his blood. Doctors expressed for the first time that Lukas’s heart was failing. Matt and Kathy decided to discharge Lukas and take him home for Christmas, understanding that it was likely to be their last together as a family. Christmas was spent laughing and loving, surrounded by family and friends.

On January 19, the family returned to Edmonton. The source of the infection was in Lukas’s dialysis tube and he underwent surgery to remove it on January 20. Doctors were pleased with Lukas’ outcome until he developed a cold a couple of days later. He was moved to the Pediatric Intensive Care Unit on Wednesday and nearly passed in Kathy’s arms on Thursday, despite being vented with high flow oxygen.

Friday January 24 dawned with Matt and Kathy making the hardest decision they had ever made: the day to say goodbye.

Cradling Lukas in their arms, Matt, Kathy, and Lylah celebrated the baby boy that blessed their lives. They celebrated his light that had burned so brightly during his short time. They held him as he was taken off oxygen and his breath stilled.

Lukas’s light has shone so brightly at Ronald McDonald House Charities® Northern Alberta. His light has shown us that when we ‘bump in the darkness’ with the intention of connection, the light grows in strength and focus. His light has shone a light on our families’ needs for compassionate hospitality. He continues to shine, as the family has created a foundation in his name. It will see other heart baby families finding support through the availability of expensive, difficult-to-source equipment. It will also see room 225 at RMHCNA, the room that the Oszust family called home for much of Lukas’s life, named in honour of Lukas.

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