When Georgie and Ben 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.

This was a far cry from what Georgie and Ben had expected when they went into hospital for Freya’s delivery, just three months earlier.

“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,” recalls 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 says: “While she was being cooled Freya didn’t move much at all, but when they began to warm her up she began to move and even tried to pull out the intubation tube which was helping her to breathe. When we got to cuddle her properly for the first time it was the best day ever!”

Freya was moved out of intensive care and onto the neonatal ward, where she was monitored and tube fed.

Ben explains: “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 life-shortening.”

It was at this time that the family met Sian, Hope House and Tŷ Gobaith’s neonatal link nurse, who works closely with local neonatal and midwifery units to support families whose babies are diagnosed with life-threatening conditions before or after birth.

“The staff on the unit said Sian would like to have a chat with us. I was a bit worried that children’s hospices would be all about end of life care but I said yes to be polite,” says Georgie.

“But 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.

“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.

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

“The nursing at Hope House is so different to a hospital because every child has their own nurse and they really get to know your child. Very quickly they become like our extended family.

“It was a lovely five days being able to relax and enjoy being together as a family. 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 that 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 have been back for help with symptom management about six or seven times now and on our last visit the nurses were as ecstatic about Freya’s improvement as we were. They remembered the first time we visited and how she was screaming and how uncomfortable she was.”

“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.

“Hope House is our first port of call when we are worried about something. It is so reassuring to have that support at the end of the phone whenever we need advice.”

So much is the trust that Georgie and Ben now have in Hope House that they are planning a short break together, while Freya is looked after by Hope House.

“If you had asked us a year ago I would have told you that I could never have imagined leaving Freya,” says Georgie. “But we know she will be safe and well looked after at Hope House. I think that is a real testament to the care she receives there.

“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. “

If you would like to make sure that Freya and all local children with life-threatening conditions can get the help they need from Hope House and Tŷ Gobaith please support Freya's Appeal. Thank you.