Fundraising - for Hope House

A family have shared the story of 16-month-old Freya, who was born with a life-threatening condition, to help raise money for Hope House Children’s Hospice’s Christmas campaign.

When Georgie and Ben Bridgwater first arrived at Hope House, they were beyond exhausted.

Their baby daughter had been born with a life-threatening condition and they were emotionally and physically drained through trying to cope alone at home.

“Everything had been fine during my pregnancy and Freya was born a week after her due date weighing 9lbs 2oz, but it was clear something was badly wrong,” recalled Georgie.

“She showed no signs of life at first, but they managed to get her heart started which was a huge relief. Within hours after birth, she was taken away by ambulance to another hospital to receive treatment for severe Hypoxic-Ischaemic Encephalopathy (HIE) due to her brain not receiving enough oxygen.

“For 72 hours they treated her with therapeutic cooling to keep her body temperature low and give her brain the best chance. We just sat down beside her and prepared for the fact that we might never bring her home.”

Ben said, “When we got to cuddle her properly for the first time it was the best day ever!”

“They did an MRI scan and the neurologist said that the area of Freya’s brain that was damaged was consistent with HIE and Cerebral Palsy, and her condition was likely to limit her quality of life and be lifeshortening.”

It was at this time the family met Sian, Hope House and Tŷ Gobaith’s neonatal link nurse, who works closely with local neonatal and

Above: Making the most of every day; Left: Cuddles at Hope House

midwifery units to support families whose babies are diagnosed with lifethreatening conditions before or after birth.

“Sian was one of the first people that really understood our situation and took the time to learn about us. She told us about everything that Hope House could help with such as respite care and symptom management for Freya, sibling support for Freya’s older sister Ella, and counselling too,” said Georgie.

“Then we took Freya home, but it was really difficult. If she was awake, she was screaming and vomiting to the point of choking. We were taking turns to hold her around the clock because every time we put her down, she would choke.”

Thankfully Hope House was able to quickly arrange for the family to come and stay at the hospice.

“We walked through the door and the nurses took Freya, who was still screaming. Julie, the clinical nurse specialist, came to meet us,” said Georgie.

“We were so tired that we just fell asleep and at 3am I woke up panicking about where Freya was. We were just not used to sleeping at night! I popped through to see her and she was absolutely fine and being cuddled by a nurse.

“That was the first time we really bonded with Freya and felt like parents instead of carers. It was also the first time we saw her smile.”

Ben says the family is so grateful to the Hope House team for their support in helping to manage Freya’s symptoms and in helping to turn her from the baby she was on their first visit into the happy little girl she is today.

“We’ve been really thankful that Julie has been able to coordinate Freya’s care and work with her consultants, our GP surgery, community nurses and other healthcare professionals. Because of Julie’s expertise and support we have been able to change things quite rapidly and respond to her needs and she is further along her treatment pathway because of that.

“Freya isn’t expected to live a full life and we just don’t know how long we have got with her. It does make us value every day more and want to get the best out of every moment. But there is no way we could do that without the help of Julie and the Hope House team, they really are amazing.”

To support Hope House and Freya’s Christmas Appeal by making a donation or buying raffle tickets for the charity’s £10,000 cash prize raffle, visit www.hopehouse.org.uk/ freyas-story.

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