When Axel’s mum Rhiannon needed support through her difficult pregnancy Hope House was there for her.

Rhiannon was told at the 20-week scan that her baby was seriously ill and she feared she may never meet her little boy.

“I had the usual scans but was told there were problems, including multiple things wrong with his heart,” she said. “The size of his heart wasn’t right and there were holes in it, as well as some other issues.

“When you’re told this news all sorts run through your head straight away. For a while I was devastated and thought Axel was going to die before he was born.”

After the scan Rhiannon was introduced to Hope House’s Neonatal Link Nurse Sian, who was there for her whenever she needed throughout the pregnancy.

“Sian was incredible and sat through a number of the appointments I had to go to, some of them were very difficult, but having Sian there was an incredible help. She knew absolutely everything there was to know about Axel,” she said.

“I was going to have Axel and knowing that there was someone who knew us and him was a real comfort.”

After Axel was born he had to undergo an operation on his heart.

“Axel had a really tough recovery after the operation and had to stay in hospital for three months. Sian came to visit us and offer support during that time. The sibling support team also took Axel’s sisters on a couple of days out and got to know them, which was a huge help for us and them.”

Sunshine Baby Group

Shortly after Axel was allowed to go home Hope House had started its Sunshine Baby Group, a parent and infant group held each week at the hospice.

“The Sunshine Baby Group has been an absolute blessing. We can’t really go to normal baby groups so this is amazing social interaction for Axel, who can be with other similar babies of the same age, and for me as I have been able to get to know the other parents.

“It’s a vital part of our week and feels like a safe space for us. Without it, we’d be so isolated.”

Rhiannon and Axel have also enjoyed their first respite stay at Hope House recently.

“Our stay was so incredible and everyone we met so was so lovely and they look after you so well.

“I was given space and time to relax, probably for the first time since Axel was born. I was even able to complete a book for the first time in a long time. I hadn’t had any form of break for a while so it was much needed.

“I was able to have a date night with my partner Max without having to take Axel and even just being able to sit and enjoy my meals in the dining room at the hospice was so nice. It’s the small things you take for granted that you lose, and it was amazing to get them back for that time.”

Our lifeline

Rhiannon says she knows Hope House will be there for Axel and the family when they need us.

“Hope House is absolutely incredible. It is our lifeline,” said Rhiannon.

“We don’t know what the future holds and Axel will need more operations, but I know that we will have Hope House there to turn to.”

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