Family of disabled baby living at St Richard’s Hospital after being made ‘homeless’ for Christmas

According to Lucy Sampson and Charlie Wade, St Richard’s Hospital in Chichester will not discharge their four-month-old daughter Pennelope until the family has somewhere to live that is suitable for her, as the hospital has a duty of care – but they claimed Arun District Council could not house them until they were discharged.

Lucy, 22, said: “With all the stress we have been through, this should be our last worry.

“My goal was for us to go home for Christmas and have a normal family day, but that isn’t remotely likely to happen. To have those dreams stretch away from you because of housing isn’t fair.”

She added: “Pennelope’s first Christmas pictures will be in hospital, and that is heartbreaking.”

When the couple found out they were expecting their first child last December, they saved up and began renting their first home in Hollist Chase, Wick, in February.

The first weeks of the pregnancy went smoothly, but at the 20-week scan, doctors noticed what they thought was a spot on Pennelope’s brain. Further tests at Southampton General Hospital showed several abnormalities, including short limb bones and a dual umbilical cord.

The couple refused a amniotic fluid test, which could detect genetic abnormalities, due to the risk of miscarriage.

When she was born on August 7 at St Richard’s Hospital, she was not breathing so had to be resuscitated – and soon after, she was diagnosed with rare chromosomal abnormalities. Her conditions include Dandy Walker Syndrome – which causes developmental delays in sitting up, walking, and talking – a folded brain which will cause seizures, and a cleft palate. As a result, she needs a constant oxygen supply and is fed directly into her stomach.

Since she was born, the couple have had to give up their jobs and live at the hospital, topping and tailing in a single bed. Because their landlord will not allow oxygen to be installed at their flat due to the fire risk it presents, they have decided to move out on December 13.

The couple said they were put in the top priority group by Arun for social housing, but had spent months on the list with nothing suitable available and little support.

Charlie, 25, said: “I’m a proud man; I’ve never claimed benefits in my life until now. I have a seriously ill daughter and I can’t take her home.”

Lucy said: “We are stuck in this cycle and there is nothing we can do about it.”

However, they praised the care they were getting at St Richard’s.

Lucy said: “The hospital staff have been amazing. They’ve let us bring in our own storage, and there’s a Christmas tree in the room to make it feel like home.

“They’ve also been brilliant at informing us on the things we can claim.”

An Arun spokesman said: “The Council is aware and sympathetic to the family’s circumstances.  We have been liaising with the hospital and family over the last few weeks to identify suitable alternative accommodation that is affordable and meets the family’s needs.

“Given the specific nature and location of accommodation required, coupled with the limited availability of social housing, we are still working to find a satisfactory solution.

“We are acutely aware of the situation and the need to resolve it as a matter of urgency.”