30 August 2018

Queensland children born with congenital heart disease (CHD) who undergo open-heart surgery in their first year will be guided towards the best possible future, thanks to a new developmental pathway.

Research shows children with CHD who undergo open-heart surgery before 12 months are at an increased risk of developmental delays when compared to the general population, including difficulties in motor skills, speech and language, attention, emotion regulation and behaviour.

Children’s Health Queensland’s Queensland Paediatric Cardiac Service (QPCS) and the Queensland Child and Youth Clinical Network (QCYCN) developed the statewide long-term developmental pathway to support these at-risk children and their families.

Karen Eagleson, CNC, Cardiac Maternal Fetal Medicine/CHD LIFE Program, said “the pathway guides clinicians across the state and parents and carers of infants at risk about what is required to support the future steps in their child’s health journey. Written information will be provided to parents prior to discharge from hospital to include in their child’s personal health record (or ‘Red Book’).”

“Parents are supported and educated on the importance of their child undergoing regular screening or assessment (which can be accessed through services close to their home) so that subtle changes can be picked up early.”

“While delays may not appear right away, they can appear over time, making it important for a child’s development to be regularly checked and supported,” she said.

One of the first patients to be supported by the new pathway is three-week-old Cayden from Townsville. Cayden was diagnosed with Transposition of the Great Arteries (TGA) at his mother Lisa’s routine 32-week growth scan. TGA is a birth defect in which there is a reversal, or switch, in the primary connections of the two main blood vessels to the heart – the aorta and the pulmonary artery.

When he was born seven weeks later in Brisbane, Cayden was taken straight into the operating theatre so doctors could perform an atrial septostomy which creates a small hole between the upper two chambers of the heart. In Lisa’s words, “it worked a treat”.

Cayden then spent a week-and-a-half in intensive care, before undergoing open-heart surgery for an ‘arterial switch’ to correct the positioning of his aorta and pulmonary artery.

Cayden should not require any further surgeries, but he will continue seeing a cardiologist for the rest of his life.

As part of the newly introduced pathways, Lisa has been educated about the future developmental screenings that Cayden will require to support his development and ensure he grows to his full potential despite such a rocky start to life.

The pathway was developed as part of a two-year project between the QPCS, its CHD LIFE (Long-term improvement in functional health) program, and the QCYCN.

Since the pathway was launched at the Queensland Children’s Hospital in May 2018, the QPCS team has referred more than 25 infants and their families to the pathway.

View developmental pathways.