Isla-Grace's Story

Isla-Grace's story for Rainbows Hospice for Children and Young People

When heartbreak turned to hope for baby Isla-Grace.

Seeing parents Megan and Ryan Clarke with their daughter Isla-Grace, you might think the young family hadn’t a care in the world. The bouncing baby girl gurgles and chuckles with joy as she is cradled by her mother, while dad looks on fondly.

It might seem an idyllic scene – yet nothing could be further from the truth and although the family is visiting to attend a family support group and to socialise with other parents, last year it was a very different story. That’s when Megan and Ryan brought their newborn baby to Rainbows to die.

Ryan, 24, said: “It really started with a scan at 20 weeks, which seemed to show that Isla-Grace’s lungs and bowels weren’t developing properly. But no-one seemed certain, despite an increasing number of scans right up until she was born. We didn’t really know what was going on.”

Yet immediately after the birth, little Isla-Grace developed hypothermia. It was as though her tiny body was unable to cope, shutting down.

“That’s when the nightmare began,” says Ryan. “But still not knowing what was wrong, or how serious it was seemed the hardest.”

Megan, 23, agrees: “One minute you’re holding your baby, ready to go home, then she is taken away from you to intensive care. We knew something was seriously wrong, but we didn’t know what. It was heartbreaking. We felt helpless.”

As their baby daughter continued to struggle for life, an MRI scan revealed Isla-Grace had suffered severe brain trauma, and doctors feared she might not live more than a
few hours.

The couple, from Leicester, were devastated.

“We couldn’t really take in what was happening. We just broke down and cried,” says Ryan.

What should have been a joyous time with the birth of their first child had instead turned to tragedy.

The family was referred to Rainbows, where their baby girl would receive the very best in end-of-life care.

Megan continued: “We expected to take her to Rainbows and leave without her. It was an incredibly sad time for us.”

And yet, looking back, the couple say their arrival here was a turning point.

“When we arrived at Rainbows, everyone was so welcoming. The whole atmosphere was very different from the hospital. It was just so positive, like a home from home. The support is amazing. And we could both stay in the hospice family accommodation to be close to our little girl. That was important.”

Each additional day that Isla-Grace survived seemed like a small miracle. Yet the heart-breaking outcome never seemed in doubt. The baby girl’s brain was swollen and it was feared further seizures would kill her.

Yet Ryan describes the moment he will never forget – when heartbreak turned to hope – the moment he felt his little girl might survive, against all odds. It was a few days into their stay at Rainbows when little Isla-Grace opened her eyes for the very first time.

“I’ll never forget it,” says Ryan. “She was just lying there and to see her open her eyes was so amazing.” He says it was the first time they had a sense of real hope.

In the days that followed Isla-Grace continued to stabilise, supported by our specialist care team. After two weeks at the hospice, the couple were finally allowed to take their little baby girl home for the very first time.

“I can’t describe what that felt like” says Megan.

Isla-Grace continues to make progress. Her future is still uncertain, but she appears a bouncing baby girl.

“We don’t know what the future holds for us,” says Ryan. “But we are so incredibly grateful to Rainbows. We don’t know what we would have done without the hospice. The staff are amazing and we’ve met other families facing similar situations. Everyone has been incredibly supportive. We don’t feel alone in facing this. And, to be honest, now we feel our little girl has a chance in life, whatever that may look like.”

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