When I initiated Miracle Babies in 2005, it was from a personal need. My second son Dillon was born at 27 weeks and although his care during his 9 week stay in the Neonatal Intensive Care Unit (NICU) and the 12 months that followed was exceptional, the idea of the Foundation came because of my necessity for longer ongoing care, support and reassurance in both his development and in my ability as the mother of an extremely premature baby.
I learnt that I wasn’t alone. I was introduced to other mothers who were feeling the same with some of those mums becoming the founding members of Miracle Babies.
The Foundation’s core focus has always been to support families through a threatened pregnancy, their time in hospital and the transition to home, offering play and support groups – our NurtureGroups for NICU babies until 6 years of age.
However, as our own miracles progressed from toddler to school age, we began to recognise, through our own experiences and through those of the parents we supported, that assistance for some families needed to continue beyond 6 years because our children were still experiencing challenges. These challenges may be very obvious, but they can also be subtle such as ranging from difficulty settling in class, being overwhelmed by tasks and building friendships.
These issues were being noticed not only by parents but also teaching staff. In a small number of cases, the Foundation has been asked to speak to and help educate childcare and early primary school teachers on life with prems and how to support them.
Now, new research is confirming what some of our parents have long known – some children who were born premature have delays and difficulties with concentration, self-control and attention.
The research conducted at the University of Tasmania found preterm children are at a higher risk of developing executive function difficulties than their peers, who were born full-term.
Executive functions in children can be represented in abilities such as being able to complete a task before moving onto another, being able to organise themselves, and being able to wait their turn for things.
Senior Lecturer in Psychology Dr Kimberley Norris from the University of Tasmania says, “We know executive functions undergo rapid changes in children aged from three to five years, and children who are born preterm are at risk of having executive function and behavioural problems”.
“Our recent research found that executive functioning deficits which occur in preterm children persist beyond early infancy, through to at least school-entry age.”
The researchers compared preterm children, aged four to five years of age, with their full term peers at kindergarten and the study found preterm children were significantly behind in regards to executive functions.
“This can impact on the child’s capacity to engage with the learning environment and can result in behavioural difficulties, ultimately affecting their development and academic performance,” says Dr Norris.
Although it needs to be stressed that it is not shown in all children born premature, this latest research may finally be describing what many of our parents of preterm children have experienced over the years. When information on this study was shared with our Miracle families via our Facebook page, we were inundated with families echoing the same experiences found in the research.
One Miracle Mum commented that she had four premature babies, and all have learning difficulties, all are inattentive ADD and two have quite bad anxiety. She says, “We have put a lot of money into the assistance our children have received through developmental specialists, tutoring, psychologists etc… We were told when my first was born at 30 weeks that it is very common for premmies to have learning difficulties and ADD and there are so many premmies born, there does need to be more support, assistance and recognition for these children before and throughout school”.
Another parent shared the same sentiment saying, “This is definitely a need! My son born at 28 weeks and quite sick now has a diagnosis of ADHD, intellectual disability and language disorder. Huge needs when it comes to learning at school”.
As founding mothers, all of our children are now in high school. When Kylie Pussell, our CEO and one of our co-founders and I learnt of the research, we nodded in a shared agreement as we continue to live this with our miracles with my Dillon, now 15, actually saying to me “that sounds like me, mum”.
Another one of our founding mothers messaged me after reading the research saying that her 25 weeker “started seeing a psychologist a little while ago and when he was reading through his psych testing results he completely missed that he was preterm and asked at what age did he acquire a frontal lobe brain injury? And I had a light bulb moment of ‘oh yeah, that makes complete sense of all his difficulties’”.
The researchers now plan to extend the study to discover if these delays and difficulties extend further into a child’s school life saying, “what we now want to know is whether these deficits continue in older primary and high school children”.
Judging by some of the responses we received from miracle families, and our own experiences, we may already know the answer to this question.
Researchers are looking to recruit Tasmanian children aged 10-17 years of age who were born 37 weeks’ gestation or later, to compare executive functioning with the preterm group.
Originally published at www.miraclebabies.org.au