Hospice 'held family together' after baby sons die a year apart

Claire and Rob Gaskarth lost two baby sons, Freddie and Louis, within a year after they were found to have the same genetic disorder

A husband and wife, who lost two babies within a year of each other, have spoken of their gratitude to the hospice which "held the family together".

Claire and Rob Gaskarth, from Clevedon, Somerset, lost seven-month-old Freddie in July 2012 and then Louis, who was born safely in May 2013, but who died 12 days later of the same inherited genetic disorder.

"The hospice helped us get through one of the most painful times of our lives, and, for that, we will be forever grateful," said Mr Gaskarth.

The couple are taking part in Clevedon's Memory Moonlight Walk on 5 October to raise money for Children's Hospice South West (CHSW).

It was a sunny day in July 2012 when Mrs Gaskarth went to check on Freddie, who was having an afternoon nap, and found him lifeless in his cot.

"He was fine all day, his normal, happy self," she said.

"I had what I thought was a healthy boy at 9am that morning, but by 9pm he was dead."

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The family were left devastated and grieving for their lost son and sibling, who medics initially thought had suffered a cot death.

“We were numb,” said Mrs Gaskarth. “We couldn’t understand what had happened.”

When baby Louis was born the following year, Mrs Gaskarth said he seemed "fine and healthy", but he rapidly deteriorated.

“We rushed him straight back to hospital where we were told his blood acid levels were dangerously high and they were struggling to regulate them," Mrs Gaskarth said.

'Special moments'

Louis was taken to NICU at Southmead Hospital and then moved to Bristol Children’s Hospital’s Paediatric Intensive Care Unit (PICU).

“They did every test going to find out what was wrong,” said Mr Gaskarth.

After several days in hospital, medics referred the family to Children’s Hospice South West’s Charlton Farm.

"Staying at the hospice, we were able to have those special moments where we just held him," she said.

"We told him we loved him and were able to stay close to him."

Genetic testing carried out after Freddie and Louis' deaths revealed both boys had an Autosomal Recessive Gene, an inherited genetic disorder.

Being at the hospice allowed Claire and Rob Gaskarth to try to process what had happened

The hospice has continued to support the couple, who have two other children, Toby, now 15, and Daisy, nine, through their grief.

"A big concern for us was how Toby was going to cope with losing two siblings," said Mrs Gaskarth.

"He was just three years old when Freddie died and just four when Louis died.

"Just knowing that if we had an issue with him, we could ring the sibling team for advice and support, we felt we were not alone."

The couple said they will be remembering the boys during the 5k (3.1mile) Moonlight Memory Walk.

"Our boys are always with us.

"Charlton Farm provided us with a safe space, a haven to grieve; we will be forever grateful," said Mrs Gaskarth.