Parents Hannah and Ian Hicks experienced mixed emotions when they found out they were expecting their second child.
Although excited by the news, they were also terrified that their unborn baby would have the same life-limiting condition as their daughter, Alice.
It was during their 20-week scan that the couple found out that little Alice had hydranencephaly. The condition means that her brain isn’t fully formed and she is sadly expected to die in childhood.
Thankfully, scans revealed that their second child was healthy but it was still a stressful nine months for the Cardiff couple as they waited for their daughter, Sophia, to be born.
“I had scans every four weeks to make sure everything was okay,” said Hannah.
“Even though we were told that there was a one in a million chance that Sophia would have the same condition, we still couldn’t fully relax until she was born. It was such a relief when we found out she was fine.”
Alice was referred to Tŷ Hafan, the hospice for children in Wales, when she was a few weeks old after she spent her first 15 days fighting for her life at the neo-natal unit at the University Hospital of Wales.
“As it became increasingly clear the doctors could do nothing more to help her, they suggested we took her for end-of-life care at Tŷ Hafan,” said Ian.
“Being told by our doctors that we would have to go to Tŷ Hafan felt like the end, but it turned out to be a new beginning.”
Alice pulled through those early weeks and, at 20 months old, is now doing incredibly well with specialists even discussing the possibility of her going to school in the future.
Hannah said: “She is almost two and is doing so much better than anyone ever predicted. She is verbalising and tries to say mamma. It’s so nice to see her improving.”
And the new family addition has completed the family. Hannah said: “Having two girls under two is wonderful but it can be hard work at times! They already have an amazing bond and we adore both of them.”
Tŷ Hafan’s support doesn’t stop for the Ely family, who recently visited the hospice for short-break care.
“There are so many ways Tŷ Hafan continues to be there for our family” said Ian.
“From the visits and phone calls from our family support practitioner, Hayley, to the short breaks we have at the hospice.
“They help make sure every moment we have with Alice is spent creating memories that will last forever.
“We know that when the time comes, and Alice reaches the end of her life, they will support us through that too.”
The family is once again supporting the charity’s Summer Precious Moments Appeal which is being launched in Children’s Hospice Week (11-17 May) to raise vital funds for Tŷ Hafan
Jenna Lewis, Tŷ Hafan’s Head of Individual Giving, said: “Making Every Moment Count’ is the theme for this year’s Children’s Hospice Week is. Our Precious Moments appeal highlights the importance of creating memories and the crucial role that Tŷ Hafan plays in helping families make the most of the time they have left together.
“We hope the public supports our appeal so we can help more families like Alice’s in need of our support.”