Nyana's Story

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Tiny Light Nyana came into this world fighting and she hasn’t stopped since.  Born at 27 weeks gestation, she weighed just 1110 grams.  Now at 18 months, this toddler is walking and getting into everything.

Nyana spent 222 days in the NICU at BC Children’s Hospital before parents Karen and Don were able to bring her home.  “I remember when she was so tiny, being afraid to love her, not knowing if she’d survive.  Being afraid to hold her, not knowing what all the tubes and wires did and whether she was in pain.”  Nyana was on the ventilator for more than two months.  It saved her life, but it caused chronic lung disease known as bronchopulmonary dysplasia (BPD).

To help her lungs strengthen, Nyana went home on BiPAP support – non-invasive ventilation.  She also needed a feeding tube because she did not have the lung capacity to take a bottle.  Except for bath time, Nyana was always tethered to a machine.  “We tried very hard to maintain a sense of normalcy for her, but it’s difficult to do normal everyday things when you’re literally tied to a 12-foot leash.” In March, she had progressed far enough to only need respiratory support for naps and overnight.  Soon, she’ll be weaned down to just nights.

The journey has been full of difficult challenges but it has only made this family stronger.  Nyana’s long-term prognosis is very promising. Lung tissue regenerates over time so this amazing Tiny Light will soon be running around the soccer pitch with all the other children.  “I hope she continues to thrive. I hope she goes on to greatness and remembers that she can do anything.”

Story Written by Elaine Yong