17 FebRemembering more of our brave heart warriors

During CHD awareness month, we are continuing to re-share some of our brave Butterflies’ stories who left this world too soon. Although these brave “heart” babies are no longer with us, they are never forgotten about. For us, the most important thing is always remembering these children and continuing to share their stories. Their lives matter and we are honoured to have been a part of their journey.


“This sweet angel is Shanell. We don’t have many photographs of her, because we only knew her for about 12 hours. These stories are perhaps the saddest for us – the children we never really get to know. Shanell was incredibly sick. She was born with a severe heart condition, as well as numerous other abnormalities. In hospital, every vein in her tiny body was poked, and she lay connected to IVs and machines while decisions were made about her future. Finally, she came to us – traumatised, cold and weak, but still breathing softly.

Our nurses gave Shanell what she needed for twelve precious hours. She was loved, cuddled and comforted, and her pain was relieved. She sucked tiny amounts of milk from a sponge, and became warm again. Her body could not sustain life for long, but she responded to the love and nurturing. It was devastating to lose her so soon – we’d only just begun to reach her frightened little heart. But we know that half-day made a difference to her experience here on earth.

Tiny Shanell passed in loving arms. Her last experience of life was tenderness and music. We miss her too, even though she was only here a moment. Sometimes we wonder who she might have grown to be, but then … we remember who she was. A unique, precious, perfect little person. Not everyone gets to grow up. But everyone still matters.”


“We didn’t know the whole story of her life, or the whole depth of her suffering, but we looked into her eyes and were witness to her courage. And we loved them for the short time that they were ours.

Robin, was a precious soul who was here so briefly, yet left an imprint on our hearts. She was a very sick little girl. She had only come out of hospital a few days before she arrived, yet she was deteriorating and dependant on oxygen almost constantly.

When a child’s days on earth are few, there is nothing more important than enfolding them in love while we can.”


“We fell in love with her quickly and hoped for a miracle, but our time with her was very short. She had peaceful sleeps in her warm incubator and was fumbling her fingers around her chin. In the short time she was ours, we saw her relax and learn to trust us. Scarlette was another dearly loved and treasured daughter.”

Shanell, Robin and Scarlette you were not with us for very long, we did not get to know enough about each of you, but you all will always be remembered. Your pictures are still on our wall and we think of you girls often. Forever missed.



Butterfly Children’s Hospices wouldn’t be able to do the work it does without your support. Please consider donating to help this invaluable cause to continue changing lives.

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