‘They let me be a mum’ - Mother thanks staff who looked after her three-month-old son before his death
PUBLISHED: 22:01 07 October 2018 | UPDATED: 09:23 08 October 2018
Tatum Reid Photography
They look after the smallest, but sickest, patients at the Norfolk and Norwich University Hospital (NNUH).
And for those who spend time in the neonatal intensive care unit (NICU) the care given there is more than just medical, and staff become extended members of the family as they fight to save the lives of those who have only been in this world a very short amount of time.
More than 130 families who spent time in the NNUH NICU came together on Saturday to celebrate the staff, who many described as “angels” and take what is hoped to be the biggest photo of NNUH NICU families to have ever been taken.
Each story told from the more than 100 families at Caistor Hall Hotel showed the overwhelming gratitude parents felt for the unit.
The youngest NICU baby at the event was little Rowan Everett.
Rowan, who was almost six weeks old, had to have a blood transfusion as soon as he was born and spent 10 days in the NICU.
His mother, Alison, 41, said the experience was “scary”.
But she said: “They are so amazing in there, they make you feel really safe and positive.”
Emma Bartlett, 34, was a NICU baby herself at the old Norfolk and Norwich Hospital, when she was born in March 1984, and was the oldest at the event to have been treated on NICU.
Her son Harry, one, also spent time on the unit when he was born.
Ms Bartlett said: “It’s support when you really need it, not just the staff but the families who are there too.”
Harper Sharrocks, now two, spent 50 days on the NICU back in 2016.
Harper was just 30 minutes from dying and was saved by her mother Natasha’s insistence something was wrong when she realised her daughter was not moving in the womb.
Harper was diagnosed with severe hypoglycaemia, hyperinsulinism and cerebral palsy and where her parents maintained a 18-hour-a-day vigil in NICU before finally being allowed home.
Mrs Sharrocks, 32, said: “The nurses were more of less our family, they became our friends.”
Mrs Sharrocks said they always had time to answer questions and often they would stay past the end of their shift to ensure they were there to update parents.
“You trust them with your baby’s life,” she said.
Elliot Furlong, 20, who was born with a chromosomal abnormality which triggered a catalogue of debilitating conditions, was a familiar face for neonatal outreach sister Charlottle Devereux, who treated him as a baby.
Elliot’s mother Sam said: “This event is so important because the staff saved my three children’s lives and now my granddaughter’s too.”
While many babies, children, and adults who had spent time on NICU were at the event, parents of those who never went home from the hospital were also represented with a balloon.
Tammy Ireson’s son Wilber Ringo Stone was born on May 15 this year but from her 20 week scan Miss Ireson, from King’s Lynn, knew something was wrong.
She was referred to multiple specialists and told Wilber would be born with arthrogryposis, which causes multiple curved joints, and breathing difficulties.
But when he arrived at 32 weeks it was also found the youngster had central core disease, which involves muscle weakness, in its most severe form.
It meant that because he had been affected so early, from seven to eight weeks gestation, his lungs had not developed properly and were very small.
Miss Ireson said: “The doctors couldn’t find another case like Wilber’s, he was very unique.
“No one expected him to go as long as he did.”
Tragically after a number of cardiac arrests, and a meeting with a specialist, Miss Ireson was told if clinicians carried on treatment Wilber would suffer.
“I always said I’ve got to carry on and give him a chance,” she said, and added many times during her pregnancy she had been offered terminations and asked whether she understood the seriousness of Wilber’s illness.
“But I also always said I would never let him suffer,” she said. “So we let him go on August 16. It was the hardest thing I’ve ever done but the kindest.”
Remembering her son Miss Ireson, 38, said: “Wilber done what he wanted. He had such a personality for such a little baby, he was cheeky, funny. He was my little miracle because I had tried for 10 years and I was going to have a hysterectomy because I have endometriosis.
“But the NICU staff were amazing. They let you be a mum and that was the biggest thing. They respected my wishes and didn’t push me with anything, when we were getting ready to let him go they let me have control. When you’ve got no control they try to give you that time.”
Katy Porter, who organised Saturday’s event, contacted Miss Ireson after finding her Instagram page, @wilbersjouney.
She was developing a set of milestone cards specifically for NICU babies to sell to raise money for the unit, and wanted to use a phrase Miss Ireson used in a post: “This superhero does not wear a cape.”
Mrs Porter said when her son Rupert, now five months old, was on the NICU it was relatively straightforward but she recognised others had more difficult experiences and some could not go home.
She said: “It’s the knowledge this is not how it was meant to be.”
Some 600 packs of the milestone cards will be arriving at the NICU next week and will be on sale to raise money for the unit.
Mrs Porter thanked Charlotte James Photography and Events for designing the cards, and Tatum Reid Photography for taking the big photo, and Caistor Hall Hotel for providing a venue for the event.
In the past 18 months the NICU fund, part of the NNUH hospital charity, has raised around £150,000.
The money has been used to upgrade facilities for parents and purchase equipment from ventilators, to cold lights, to freezers for breast milk.
Other items the fund wants to purchase in the future include two additional intensive care incubators, furniture for a breastfeeding room, additional breast pumps, additional vapotherms and extra items for parents rooms.
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