When Claire Gaskarth put her beautiful baby boy down for his usual afternoon nap one summer’s afternoon, little did she think it would become a day that changed her family’s life forever.
It was a sunny day in July 2012, when Claire, 47, from Clevedon, put her 7-month-old son Freddie down for his normal afternoon nap, returning to check on him shortly after.
But when she looked in on Freddie in his cot, Claire found him lying there lifeless.
Claire immediately called the emergency services who talked her through how to administer CPR to baby Freddie, with paramedics arriving just minutes after.
Freddie was rushed to hospital where tragically he was pronounced dead.
“He was fine all day, his normal happy self,” said Claire, “so I just put him down for his nap as I did every day.
“I had what I thought was a healthy baby boy at 9am that morning, but by 9pm he was dead.”
Claire and husband Rob and their son Toby, then 3-years-old, were left devastated and grieving for their lost son and sibling which medics initially thought had suffered a tragic cot death.
“We were numb,” said Claire. “We couldn’t understand what had happened.”
While working through their grief, the couple fell pregnant again six weeks later.
The pregnancy was normal with Claire and Rob welcoming baby Louis, weighing 8lb 9 ounces, on May 14, 2013.
“He was beautiful,” said Claire. “He seemed fine and healthy when he was born.”
The family took Louis home that evening but later started to become concerned about his condition.
“He started to blow bubbles and his colour changed,” said Claire.
“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.
“Initially they thought he may have an infection or a metabolic issue.”
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 Rob, 49.
“They did a lumber puncture, biopsy and literally threw everything at discovering what was the matter with him.
“The lumber puncture found discovered his spinal fluid was highly acidic and he was fitting constantly in his brain.”
After several days in hospital, medics referred the family to Children’s Hospice South West’s Charlton Farm Hospice.
Staff from the hospice visited the family in hospital, explaining how the charity could help and inviting them to visit.
“We spoke to the staff and agreed for us all to go to Charlton Farm," said Claire.
After being taken off his ventilator, Louis deteriorated further and passed away on May 26, 2013.
“After we lost Louis, we wandered about the hospice in a daze,” said Claire.
“It gave us that time to grieve, while the staff at Charlton Farm held us and kept us together.”
The family spent a week at Charlton Farm with Louis.
“Since he was born Louis had constantly been in a clinical environment,” said Claire.
Staying at the hospice we were able to have those special moments where we just held him, told him we loved him and were able to stay close to him.
“Being at the hospice with the amazing support of the staff allowed us to try and process what had happened.
“Charlton Farm provided us with a safe space. A haven to grieve.”
Dad Rob said: “The hospice was the opposite of a clinical environment. It was loving and healing.”
While at the hospice, Toby was supported by the sibling team.
“The team supported him, took him out and were constantly, quietly assessing him to try and understand how he was coping with the loss of his brothers,” said Claire.
“A big concern for us was how he was going to cope with losing two siblings. He was just 3 years old when Freddie died and just 4 when Louis died.
“We were always upfront with him about what had happened, but he just didn’t really understand.”
The hospice has continued to support the family through their grief.
“We attended a remembrance weekend at the hospice where we sat and spoke to other families who had lost children,” said Claire.
“Being able to share those experiences helped us feel that we were not alone.
“The hospice also supported Toby and just knowing that if we had an issue with him, we could ring the sibling team for advice and support.
“They gave us reassurance and we knew that whatever problems we faced we had their back up – just knowing they were there helped us feel calmer.
Rob said: “Having the hospice there helped us deal with our loss as a family.
It has been a comfort blanket which has always been there for us.
Genetic testing carried out after Freddie and Louis’s death revealed both boys had an Autosomal Recessive Gene.
Autosomal recessive is a pattern of inheritance characteristic of some genetic disorders.
“Autosomal” means that the gene in question is located on one of the numbered, or non-sex, chromosomes.
“Recessive” means that two copies of the mutated gene (one from each parent) are required to cause the disorder.
When the family fell pregnant again in 2014, baby Daisy was genetically tested in the womb.
Tests revealed that Daisy, who was born on May 16, 2015, was clear of the disorder. Toby has also since been tested and is also clear.
The family has remained involved with the hospice. Rob has completed a charity cycle ride to raise money while Claire took part in Clevedon’s first Moonlight Memory Walk in aid of Children’s Hospice South West (CHSW) last year, performing with her acapella singing group at the event.
“We went through what no family ever wants to experience,” said Rob.
“But we are a strong family and we got through it and have come out the other side.”
“The boys are always with us,” added Claire.
“We talk about them all the time.
“The hospice is the most amazing place, but one which every family hopes they will never need.
“It helped us get through one of the most painful times of our lives and for that, we will be forever grateful.”