Abbie's story
As her twin girls turn three, Abbie reflects on the difference a pain severity scale could have made to their time in intensive care.
When Abbie gave birth to identical twin girls prematurely at 27 weeks and five days, they each weighed about a pound. For the next five months, they were in a neonatal intensive care unit 80 miles from home, undergoing numerous medical procedures.
Now, as the girls turn three, Abbie reflects on their time in neonatal care, and the difference a pain severity scale could have meant to them.
They each experienced major surgical procedures, episodes of sepsis, and too many blood and platelet transfusions to count.Abbie
Stormy journeys
“The girls had what were described as ‘stormy’ clinical journeys,” Abbie explains. “They each experienced major surgical procedures, episodes of sepsis, and too many blood and platelet transfusions to count. One of my daughters had a bowel perforation and subsequent ileostomy, which was thankfully later reversed. She also had laser eye surgery.”
“The day-to-day care also involved hourly blood tests and lots of lumbar punctures, just a myriad of daily procedures.”
A pain severity scale
Abbie often felt the decision-making around her children’s care was determined by the clinicians. “I don’t remember a lot of communication about those day-to-day tests and treatments,” she says. “A lot of procedures were seen as ‘this happens all the time here, this is what we do.’”
“The pain severity scale is incredible because it’s telling me what I already know – with the caveat of what we can do to help the pain. Having access to a scale like this would have been empowering. It’s equitable access to information that is there for us all to read and understand.”
Abbie wished staff were more direct about the pain the twins were experiencing. “Some clinicians are concerned about talking about pain with families. But they don’t need to be concerned. We want to know the facts. These are our children. We know they’re in pain. You can’t Disney-fy this.”
Developing the scale
Thanks to our Changing Policy and Practice Award, Professor Lorenzo Fabrizi and his team have now developed a pain severity scale based on 59 clinical trials, ranking 15 common neonatal procedures – such as heel pricks and collecting blood samples – on a scale from 0 to 100. The scale recommends things parents and clinicians can do to mitigate pain for each procedure, such as skin-to-skin contact.
Learn moreReflecting on those five intense months, Abbie says, “It was a hideous time. I now look back on that period and I don’t know how we did it. We felt tremendous fear, worry, and sheer fright that we would lose them at any moment.”
Abbie is now an advocate for better awareness of family experiences in neonatal care. Her aim is that parents are viewed as equitable partners in their baby’s care. “Right now, there are people sitting in the chair that I sat in,” she says. “And tomorrow there’ll be someone else. We need to do better for them. We need to listen to families, and improve services based on what they tell us.”
Abbie's story and Lorenzo's research on pain in babies is featured in our latest impact report.
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