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At 16 weeks pregnant, Goh Guan Zhen, 38 received news that her baby had hypoplastic left heart syndrome (HLHS) – a congenital condition where the left side of the heart is underdeveloped.
Most infants born with HLHS do not survive past a week, and Guan Zhen and her husband Benjamin Tan, 42, were faced with the options of terminating the pregnancy, multiple surgeries, or comfort care for their first-born.
“We were actually preparing for her to go more than to live. Had we chosen surgery, she would be transferred to ICU right after she was born which meant that we would not have had the chance to hold her. And if the surgery was unsuccessful, she would have died on the operating table.”, said Benjamin. In a decision rooted in love, they opted for comfort care to allow themselves the chance of experiencing parenthood, however short-lived it may be.
Debbie at 8 months old
Against all expectations, little Debbie remained in a stable condition past her first week. Despite her fragile condition, Guan Zhen and Benjamin embraced parenthood with unwavering love, choosing to focus less on Debbie’s illness and more on the joy she brought into their lives.
As first-time parents thrust into an uncertain situation, they found themselves keeping vigil around the clock. “Everything felt like it could be her last, even something as small as singing her a song.”, Guan Zhen shared.”
With the help of HCA’s Star PALS team of doctors, nurses and medical social workers in providing emotional and mental support in addition to medical assistance throughout the post-delivery and recovery process, Guan Zhen and Benjamin were better able to navigate this journey.
Debbie with her parents Guan Zhen and Benjamin
At 10 months old, Debbie is a few months away from her first birthday, but Guan Zhen and Benjamin are prepared for the realities of her condition even as they remain hopeful. “It is a milestone that she has made it past the 10-month mark, given the volatility of her condition. But every day we have with her has been a milestone, and we always remind ourselves to parent her as best as we can in the time that we have with her.”, the couple said.
Debbie may be small, but the impact she has made in so many lives has been great. Guan Zhen said, “We look to Debbie’s situation to share with others that there’s always hope and joy even in the midst of things unknown.”
This Mother’s Day, honour the greatest love of all with a gift towards a worthy cause. Consider making a contribution to help HCA Hospice continue providing medical and psychosocial support to patients with life-limiting illnesses and their caregivers.
