Amreet and Ranjodh were excited to begin their new chapter as parents – they couldn’t have expected the rollercoaster ride ahead.
Amreet was 28 weeks pregnant when issues began to crop – scans were showing their little baby wasn’t growing, there were concerns about kidney function. Other complications would arise until finally Rumi needed to come out by way of an emergency c-section. It wasn’t long after, the family moved to the Alberta Children’s Hospital where they would receive a diagnosis that would change everything: MIRAGE Syndrome.
Her rare disorder impacts blood cell production, growth, the immune system, adrenal glands, and can cause intestinal issues and other abnormalities that more often than not lead to early mortality. It was devastating to hear, and the path before them was uncertain. How would they manage all this?
But as the days wore on, and as experts from across the hospital assembled for Rumi, and to help the family learn more about her diagnosis, Amreet says they knew they were in good hands. Due to the complexity of Rumi’s genetic disorder and the breadth of internal systems it impacts, Rumi is followed by “virtually every clinic” in the hospital – vision, endocrinology, genetics, audiology, hematology, immunology, and the complex care team among them. Rumi spent her first birthday at the Alberta Children’s Hospital – and while other parents might lament having to spend their child’s first birthday in hospital, for Amreet, it made sense: She got to spend her big day with some of her favourite people. Rumi also loves her music therapy sessions, which bring her and mom a lot of joy during hospital stays.
“She is loved there, and they take care of us as parents, too. I cannot imagine or wrap my head around what we would do without the hospital,” mom says.
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There have been tough moments inside the hospital: hard conversations and unwelcome test results. Amreet says there is always someone there to help. From the nurses who would hold and hug Rumi and insist mom go grab food or just take a moment, to the spiritual health practitioners in the Sacred Space, an interfaith oasis for patients and families with diverse spiritual, religious, cultural, and philosophical values, beliefs, and practices.
Amreet and Ranjodh are thankful that with all the ups and downs and uncertainties, the Alberta Children’s Hospital and its caring staff are there for them.
