Beyond the first year
“The guilt can stay with you long after those initial weeks,” says Kylie.
“There is the guilt that your baby had such a tough start to life, they really had to fight hard to survive.
“Later on, anything that happens with your child, whether they don’t hit their milestones, they are slower to develop in some way, or they struggle with their social skills, parents tend to worry if it’s because they were born prematurely.”
Research suggests that when pre-term and very pre-term children start school, they are at a higher risk of learning difficulties, behavioural issues and executive functioning.
An Australian study in 2019 found that weekly increases in gestational age beyond 34 weeks were associated with higher mathematics scores for children aged eight or nine years old, independent of their working memory.
Another Australian study in 2020 had a similar finding, children born pre-term are at risk of significant academic difficulties in reading and mathematics compared to term-born children.
A UK study pointed to the fact that pre-term children were enrolled in school based on their actual date of birth, instead of their due date, which sometimes meant they were enrolled earlier than would be expected. They found that by sending pre-term children too early to school appeared to have consequences for them in their adolescent and adult years.
Ongoing research by MCRI showed that premature children have three times the risk of disorders like autism, anxiety and ADHD.
“Miracle Babies has launched a hub which provides parents of pre-term babies with an enormous amount of information for when their child is at primary school, high school and even into adulthood,” says Kylie.
To best support pre-term babies in school, Kylie recommends talking to the educational providers about their child’s birth story.
“It’s about giving teachers the information and tools for how you can work together to best support your child’s needs,” she adds.
Support after pre-term birth
To support parents in the immediate aftermath of a pre-term birth, Miracle Babies runs a support program called the NurtureProgram
“We run a 24-hour helpline that families can call to speak to a trained support person who has experienced having a premature or sick baby,” Kylie explains.
“Calling that helpline is often the first connection to talking to someone else who has been through it, who can understand and empathise.”
The program also provides hospital visits to new parents, as well as support groups after discharge.
In 2021, the Impact Institute found the benefits of peer support programs were overwhelming positive.
They found they increase parental engagement within the NICU, improved parental mental health and reduced parental stress, improved parental/infant attachment and bonding, improved social connection, improved perceived social support for parents/families, empowered parents to make informed health choices and improved breastfeeding success.
“Most NICUs have social workers and nurses who are a great support to parents,” adds Kylie.
Kylie recommends that friends and family need to be patient with parents of pre-term births as the experience can be quite overwhelming. Simply being present for them and supporting them with daily life chores can be the support they need.