Palliative care Couple tell of pain at losing daughter aged just four months old
ANDREA and Dan Atkins, parents of Sophie Atkins, who died aged four months, have opened up about what it is like to lose their daughter and how grateful they are to the Palliative Care and Bereavement Support team at Bristol Children’s Hospital who stood by them throughout
“They brought her to us wrapped up in a blanket and in a moses basket. She looked so peaceful and it felt like the most natural thing to be with our child in that moment,” said Andrea.
That morning, Andrea’s little girl Sophie had died on December 7, 2017. She would have been almost four months old and had never been able to leave the hospital.
Born with a genetic condition which meant she had been unable to absorb calcium while in her mum’s womb, Sophie had underdeveloped rib cage and lungs.
Doctors did not expect she would be taken off of ventilation, but after moving to Bristol Children’s Hospital from Derriford Hospital in Plymouth to be under specialist care, she went from strength to strength.
Sophie’s condition was so rare only six other children in the world have been diagnosed, one in Japan and the rest in the US. However, as time passed it looked like she might not have any long-term conditions associated with it.
So, in the fortnight leading up to her death, Andrea and dad Dan – two new parents – had been learning how to work a home ventilation machine.
And the night before Sophie died, they had gone back to their room where they had been staying on St Michael’s Hill to pack, having been told to expect to take their daughter home for the very first time the next day.
“We got into bed about 12am and then the phone rang. It was weird, we had this phone next to our bed the whole time but whenever it had rung before it had never been bad news,” said Andrea, 32.
“But this time they said she wasn’t herself and that they didn’t know what was wrong and we should go back down.”
Around 5am, Sophie went into cardiac arrest after her bowel had twisted with no prior warning or symptoms.
“It was so unexpected and so unfair,” said Andrea. “After surgery, she was put in an induced coma because she had suffered organ failure across her body and brain damage. Two days later we turned off her ventilation.”
Shortly after, she and Dan along with their own parents were led to the Rainbow room so they could see Sophie for the last time.
In this room, Andrea and Dan, like many parents before them, held their child for the last time making some final lasting memories with her.
It is hard for anyone to imagine something like this, much less someone being able to offer any comfort during such a time.
But for Andrea and Dan, they said a small team – who they had grown to know since they set foot in the hospital – were able to offer that.
Dan, 37, said: “We didn’t know what time of day it was and we couldn’t eat. We just called our parents at some point so that they could come from Plymouth and be with us, but aside from that, we couldn’t think of doing anything.
“The Palliative Care and Bereavement Support Team did so much, they had our belongings brought down to us so it was one less thing we had to think about. They sat with us and just held our hands and guided us as to what to do with Sophie’s post-mortem and they even helped with her funeral arrangements.
“During that time I didn’t know what was wrong or right and my initial reaction about the Rainbow room was I didn’t know if I wanted