Family stories

Tia’s story

In July 2013, Chris and Shani from Worthing welcomed their little girl, Tia, into the world. Tia was born with severe brain damage so she spent the first two months of her life in hospital. “Despite her complex needs, Tia loved being cuddled, enjoyed swimming and anything sensory,” says Chris.

Image of a baby with a tube coming from her nose

Help in their own home

When Tia was eight months old the family were introduced to Chestnut Tree House. They soon met Karen, their Community Nurse, who quickly became a big part of the family’s life. “Tia had a very difficult start in life,” says Karen. “I was there to support and care for Tia and her family at home, a place she loved to be. I remember that her room was filled to the brim with anything pink, fluffy, or princess-themed.”

“My visits meant that Chris and Shani could take a well-earned break, and Tia could have lots of different experiences. Often the family would use our visits as an opportunity to have a rest and a few hours’ sleep, something that isn’t always possible with a child with complex needs.”

Visiting the House

As well as community visits, Tia and her family often visited the hospice building near Arundel. “Tia loved all sorts at the House, from swimming or spending time in the sensory room, to creating her very own masterpieces in the arts and crafts area,” says Karen. “However, her activities were always short-lived as she always wanted to stop whatever she was doing for a cuddle.”

Due to Tia’s complex medical needs, her health was vulnerable and unpredictable. In 2014, just before Tia’s 1st birthday, she was rushed to Chestnut Tree House for end-of-life care.

“The Chestnut Tree House team were fantastic at looking after Tia” says Dad, Chris. “They helped us make some last memories with her; she had chocolate for the first and last time and went swimming.”

But Tia was incredibly strong-willed and resilient, and to show her sheer determination and strength, she pulled through and was eventually discharged home two weeks later.

Montage of Tia being held by her father, and an image of Tia at the House.

Saying goodbye

In 2015, Tia passed away at home, with her Dad by her side. Chestnut Tree House cares for families after the death of a child or young person, offering the use of their ‘Stars’ bereavement suite. This meant that Tia’s family were able to spend some special time with her immediately after she passed away, helping them to say goodbye in their own way.

Reflecting on this difficult time of their lives, Tia’s Dad, Chris, says “Chestnut Tree House will always be part of our lives.”