Little Mia Parry spent her last three weeks at Hope House. Those days were some of the happiest of her short life, recalls her mum Martine.

“Even though it was a sad time because we knew what the outcome would be, it was the best time as well,” says Martine.

“We just had fun and laughter, toys and balloons, and Mia even got to sing with the hospice choir. She absolutely loved it all.”

Mia was just four years old when she died. She was Martine’s fourth child – a longed-for girl who was sister to three older brothers Liam, Caiden and Kyle.

A 12 week scan had flagged that Mia might face difficulties. But at the 16 week scan it was confirmed to Martine that her baby was suffering from hydrocephalus and spina bifida. She was asked if she wanted to continue with her pregnancy, and warned that her baby might not survive her birth.

“I said I wanted to give her a chance. If she passed away then she passed away but she deserved a chance. I could feel her kicking. She was fighting on.”

Martine was put in touch with Hope House’s Neonate Link Nurse, who supports families whose baby is diagnosed with a life-threatening condition during pregnancy or at birth.

“Karen came with me to my appointments. She was a great support and really helpful at explaining things to me and helping me say what I wanted. She helped me plan for the birth, and what would happen if Mia didn’t survive.”

Mia was delivered by caesarean section. Martine was prepared for the worst, but couldn’t believe her eyes when her baby girl was born a healthy pink colour and crying loudly.

“I was so confused. She looked just like a normal baby. I was glad I have given her a chance.”

Mia was taken to another hospital for an operation to close up the opening on her back and another operation on her head. Martine was thrilled to hear that both operations had gone well and that she was feeding and didn’t need oxygen.

Hope House’s sibling support worker Mary brought Mia’s brothers to the hospital, and helped Martine explain to them that their little sister was very poorly but doing well. Another member of the Hope House team helped bring the family home from hospital when Mia was ten days old.

For the next three years Mia spent quite a lot of time in and out of hospital. The Hope House team was there to help support the family, spending time in hospital when Martine was with the boys so that Mia had a familiar face on hand, and helping the boys come to terms with their sister’s illness.

The family also came to stay at Hope House for respite care, which gave Martine a chance to take a short break from her 24 hour a day caring role. She even felt confident enough to take the boys home and let Mia stay on her own.

“She absolutely loved Hope House and I knew she was safe there. It was such a massive relief and it gave me time to do things with the boys or to take a little time for myself,” says Martine.

“They felt like family. The nurses knew Mia was poorly, and how to care for her, but they still made things fun. It was all about giving her a good life and finding a way to do the things we wanted, such as riding a rocking horse. They would never say something was impossible.”

Liam, Caiden and Kyle also enjoyed time at Hope House and going on trips with the Sibling Support team, and other children whose brothers and sisters have life-threatening conditions.

“They’d go to the beach and come back having been soaked from head to toe, but you could see they’d had such fun. They’d talk to Mary and tell her stuff they wouldn’t tell me and she helped them to understand what was happening.”

Last October Mia’s health took a turn for the worse and Martine began to discuss end-of-life care with the hospital.

“I’d said from day one that she wasn’t dying in a hospital or at home. I chose Hope House because we knew everyone there and they knew us really well and I knew they would look after us all. There was nowhere else I wanted to be,” says Martine.

“The plan was for Mia to be sedated for the ambulance ride to Hope House and we would take her off the ventilator that night while she was sleeping and she would go in her sleep.

“But Mia wasn’t ready. She woke up the next morning and we spent the next three weeks at Hope House. She did everything – we went for a walk in the Fairy Garden, went on the playground and she even joined the Hope House staff choir for their practice! She loved it!

“I didn’t want her to be in bed and for everyone to be sat around it all sad because Mia was never sad.

“I had the room next to hers, but the staff helped me put her in my bed and did everything we wanted. It was so relaxed. We had toys, balloons and everything and nobody batted an eyelid.

“She loved a laugh and a gossip. Even when she was quite heavily sedated the last few days everyone would come in and have Chinese on our bed with her and she was still trying to join in. No one made a fuss – they were just letting me enjoy my time with Mia.”

The boys came to Hope House too. Martine was unsure at first, but Mary discussed her fears with her and suggested that, in her experience, letting brothers and sisters know was is happening is better in the long term.

“Now I’m so glad I listened to Mary because Liam came to stay at Hope House a few days before Mia died. I think he expected to see her looking really poorly, but he just saw her asleep. He had photos with her and his last moments with her were good ones. All the boys came in to Hope House for tea and Mary spoke to them. Even though it was a sad time it got them involved and has definitely helped them cope better.”

Mia died in November last year. Martine ensured the funeral was a real celebration of her bubbly daughter’s life, with smiles and party songs. A sad day but a good day.

Since Mia’s death, the boys continue to be supported by Mary and the Sibling Support team and Martine has also started counselling at Hope House.

“It really helps talking to someone who is outside the situation,” she says. “I know that I can go there and just have a rant and it is kept between the two of us. It is a big help.

“I dread to think what it would have been like if Hope House wasn’t there. It would have been really sad and I think Mia would have gone a lot quicker and it would have been more upsetting. This sounds crazy I know but you couldn’t have asked for it to have gone any better.”

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