For parents, the news that your baby’s life could be shorter than expected is unimaginable. This was the case for Derek and Rebecca Van Oosterom when their baby Ethan was diagnosed with an extremely rare, life-limiting illness, Trisomy 5p and a deletion of chromosome 1p36.

“It was difficult to get straight answers from the doctors and nurses on what to expect for his life,” Derek recalls.

Canuck Place family, the Van Oosteroms

When Ethan was born, the reality of what the Van Oosteroms’ faced took time to sink in. Wanting to hold on to Ethan for as long as possible, it was difficult to make the decision to move Ethan towards pediatric palliative care, knowing that meant his time with them would be shorter than they hoped.

“We kept trying to convince ourselves that he would eventually be coming home with us. Once we made the incredibly difficult decision of switching to comfort care, we were able to focus on Ethan and our family to make sure we were able to have the best family experience possible with the time we had left.” Derek and Rebecca share.

Moving to palliative care gave the Van Oosterom family the ability to leave the NICU together and spend the time they had left with Ethan at Canuck Place Children’s Hospice for end-of-life care. Once they arrived at Canuck Place, the focus shifted to quality time together as a family while the Canuck Place team worked quietly in the background to support Ethan’s medical care.

While their stay at Canuck Place was short, it gave Derek, Rebecca, Ethan, and his two older sisters a chance to make memories together as a family. It was those simple everyday family activities that the Van Oosterom’s say were some of their most cherished moments together.

Van Oosterom family

“Our favorite memory is just being ‘normal’ with Ethan,” Derek shares.

“Once his ventilator was removed, Rebecca could just pick him up and hold him. With all his hoses and wires in the hospital, it was always an ordeal to transfer him from his bed to our arms. Little things like picking Ethan up and walking downstairs to the kitchen for a cookie meant everything to us.”

Their stay at Canuck Place allowed Rebecca and Derek to focus on being Ethan’s parents rather than his complex medical needs. In the time they had left together, they were able to make meaningful memories, keeping Ethan close even after his passing. Rebecca and Derek continue to be supported by Canuck Place counsellor Natasha, who helps them navigate their grief.

the Van Oosterom Family

In times of uncertainty, Canuck Place was a home for the Van Oosterom family when their home wasn’t within reach. The services the Van Oosterom family accessed with Canuck Place such as pain and symptom management, memory making, end of life support, grief and bereavement counselling and others, support so many other families with journeys similar to thesirs.

It is through donor support that Canuck Place continues to provide these services to children and families across BC and the Yukon.

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