The mother of a newborn who spent his final moments in the care of the staff at Robin House in Balloch have told how vital they were in her son’s last days.
Auley James’ arrival nine days before Christmas in 2018 was a “happy surprise” for Dana, who already had three daughters with her partner, Gary.
Unfortunately, Auley James wasn’t able to breathe properly after his delivery and had to be rushed to the ICU ward for immediate ventilation.
At the same time, Dana was taken to theatre for treatment due to post-birth complications.
When she returned to the ward, Dana was given the devastating news by doctors that there was “something seriously wrong” with the tiny tot, who had been born with a protruding lump on his head and that the next 24 hours would be crucial.
Doctors initially suspected Auley James might have Spina Bifida, but further tests showed he actually had an encephalocele, a rare type of defect where part of the skull does not form correctly, and a portion of the brain sits outside the skull, in a protruding sac.
Dana, now 34, recalls: “At that point, they didn’t know what was wrong with him, just that he was very ill.
“I was exhausted, and my whole body was in shock, but I was determined to hold him. He was so beautiful and his dad’s living image. He had ginger hair like both his dad and me.”
After two days, Auley James was transferred to the Queen Elizabeth Hospital for specialist neonatal care, and despite still being reliant on his ventilator, Dana was able to feed him breast milk through a syringe and even change his nappy.
The couple were given the choice to say goodbye to Auley James before Christmas but decided they wanted to spend Christmas Day together, knowing it would be their first and last with him.
Dana said: “Christmas Day was very emotional and difficult, but we tried to make it as memorable as possible by making little Christmas decorations with Auley James’ footprints and listening to songs in his hospital room with him.”
After Christmas, arrangements were made for the family to go to Robin House children’s hospice in Balloch for Auley James to spend his last days and receive specialist end-of-life care.
She said: “When we got to Robin House the staff were just like real-life angels, greeting us with open arms. They made everything so special for us and made us feel like we were at home.
“All the festive decorations were still up, and the hospice looked beautiful. Our girls said it was the best Christmas they ever had, with all the activities they got to do and the special gifts they were given.
“All our washing was done for us on site, and lovely home meals were provided for all of us every day, which was invaluable.
“On the day we were preparing Auley James’ funeral with the priest and undertaker, there was a pantomime on in the hospice, so once all the arrangements were made, we all sat down to watch it.
“A day that should have been the hardest day of our lives ended up being a happy one thanks to all the staff at Robin House.”
The family were told that Auley James could stay ventilated for as long as they wanted.
After coming off the ventilator, the family were told, Auley James might only survive for five minutes, but they were amazed when he managed to breathe on his own for three and a half hours.
Dana said: “We held him in our arms, and it was during this time we were able to take his handprints and footprints. Then he just slipped away peacefully in our arms.”
After Auley James’ death, his family continued to receive support from Robin House and stayed there right up until two days before Auley James’ funeral on January 6, 2019.
Dana said: “It’s been almost four years now since we lost Auley James, but he lives forever in our hearts, and we remember him each Christmas as a family.
“We remember him at Christmas time by raising money for CHAS in the months leading up to his birthday on December 16, and we have a special candle we light for him at the table on Christmas Day.
“We will never forget the love and support we received at Robin House and will always be so grateful for the care they showed our beautiful baby son.”
Since Auley James’ death, Dana has fundraised for CHAS through various events including the Kiltwalk, zip slides and is also now a proud CHAS volunteer.
Many CHAS families have to contend with being forced out of work to care for their children, deal with the daily struggle to pay for fuel to attend various medical appointments, live in fear of blackouts, as well as, deal with the soaring costs of food and energy bills.
Dana said: “The support CHAS has provided since Auley James died has been amazing, and we are grateful to it more than ever now as a result of my family being impacted by the cost-of-living crisis.
“I had to give up work due to my mental health deteriorating after the loss of Auley James, and as a family, we are definitely feeling the strain of rising costs in the run-up to Christmas this year.”
To donate to CHAS’s 2022 Christmas appeal, please visit: https://www.chas.org.uk/get-involved/support-us/christmas-appeal
