Orla's Story

At her 20-week pregnancy scan, Laura was given the unexpected, and devastating, news that one of her babies, Orla, had Hydrocephalus – a build-up of fluid on the brain. Laura had already suffered two miscarriages and undergone IVF.

Not wanting to deliver the babies early for fear of harming the other twin, Luca, medics predicted Orla was unlikely to survive past childhood. The twins are now three-years-old.

“Orla is a very determined little girl,” said Laura. “It really is amazing that she is still here. Paediatrics told me they didn’t think she would have a long life and when she was born, the nurses were doing memory boxes because they didn’t expect her to live. 

“It has been so hard. The whole pregnancy was difficult; I couldn’t enjoy it as I didn’t know what was going to happen.”

Orla suffers frequent seizures, which is a constant worry for Laura. She says the support she gets from our hospice is invaluable. 

“We were put in touch with Rainbows right at the beginning as they sourced a special car seat, that enabled Orla to lie down, to transport her home from hospital,” said Laura. 
“Rainbows helped out right from the start. They helped us to leave hospital and they are still part of our story now.  

“When I first looked around I was really nervous and didn’t know what to expect. I thought it would be a really sad place. But it was amazing. The staff go above and beyond and look after the whole family, which is lovely.

“Orla loves Rainbows. She loves the Multisensory Room the most, and loves all of the lights. She also enjoys the Music Room and the Arts and Crafts. 

“And Luca also loves it. He talks about Rainbows every day. He always says he misses it and there is a countdown for our next visit and he keeps asking to go back.

“I also appreciate talking to other 'Rainbows mums', to get ideas and share stories and experiences. We all understand each other. We have gone through, and are going through, something that can be unique in our normal circles, but at Rainbows we really are on the same page. The support, practical help and understanding is invaluable.”

While the future is uncertain for Orla, Laura takes every day as a blessing. “When I really think about it, it is hard,” she added. “I do get upset, but to see how she is interacting with her twin brother is very special. I just take each day as it comes.

“And she does so well. She isn’t deaf or blind like doctors predicted; she doesn’t miss a thing. She can’t walk but she will bum shuffle and cruise around furniture. 

“She always smiles and she makes everyone laugh with her cheeky character.

“Orla’s speech is also very clear and she loves to sing songs, she is good at remembering lyrics. Her favourite song is Hungry Eyes. 

“The twins are now at nursery. We never thought we would get to this point, and every day is something to be thankful for.”
 

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