In August 2024, when I received the devastating news that my baby would be born with a severe heart defect and might not survive, my two youngest children were with me. The doctor advised me to consider termination, as the road ahead would be fraught with challenges. I returned home to weigh my options, but I knew I needed to involve my children in the conversation. At 22 weeks gestation, their little sister was already deeply loved, and there was no way to avoid the grief that would come, regardless of the decision.
I gently told my daughter Sian, who was just seven years old at the time, that her sister might not live long and that it would be incredibly sad if we met her only to lose her. At that moment, I had no idea what the best course of action was for our family.
Her response was nothing short of remarkable, and it gave me the strength to continue, despite the difficult odds we faced.
“It’s okay, Mummy. We will love her for as long as we have her. Even if it’s only one hour, it’s better than never having a sister.”
Such wisdom and strength from my young daughter left me in awe and provided the resolve I needed to carry on.
Further scans confirmed that my baby had Hypoplastic Left Heart Syndrome, a condition with a survival rate of around 85% with surgery. The entire pregnancy, I was too afraid to let myself hope or get excited.
When my little girl Lamees finally arrived, she was met by a full team of doctors prepared for her delicate condition. But it was Sian’s face that she saw first.
Tragically, Lamees passed away at just 23 days old. Despite her own heartbreak, Sian took it upon herself to wash and dress her baby sister for the funeral, wiping her little nose and cuddling her for hours, even though the pain was nearly unbearable. When Sian was feeling particularly upset the other day, I reminded her of the wise words she once shared with me.
“I didn’t think it would hurt this much, Mum, but I’m still glad I got to spend time with her. I will always love her, even if she’s not with us anymore.”
Apologies if the photo below is difficult to see, but there’s so much love in it that I had to share.
