‘Our baby was born with heart disease’

 

Hearing the heartbeat of their unborn child is a pregnancy milestone most parents experience with a sense of magic and wonder.

But when Rachel Levingston and husband Mitch were told at the 20-week scan their baby's heart had not properly formed, wonder quickly turned to worry.

Silence fell in the room as the ultrasound revealed a congenital heart defect called hypoplastic left heart syndrome (HLHS).

"Every heart is slightly different but essentially it means the left heart hasn't developed," Ms Levingston said.

Rachel and Mitch Levingston with Asher, now two-and-a-half years old, and their six-month-old baby Hazel. Picture: Adam Yip
Rachel and Mitch Levingston with Asher, now two-and-a-half years old, and their six-month-old baby Hazel. Picture: Adam Yip

The couple were connected with the Heart Centre for Children where knowledge and support equipped them with clarity and confidence to continue the pregnancy until Asher, now just over two-and-a-half years old, was born.

"Prior to the birth, you don't know the full extent of what you're dealing with," Ms Levingston said.

"There's quite a bit of research into HLHS these days and once we met with a paediatrician at the Heart Centre, he did not mess around. We were able to access lots of information to feel more relaxed."

Asher’s parents said watching their son and daughter during their “giggle-a-thons” was pure joy. Picture: Adam Yip
Asher’s parents said watching their son and daughter during their “giggle-a-thons” was pure joy. Picture: Adam Yip

About one in 100 babies are born with congenital heart disease and it is one of the leading causes of infant hospitalisation and death.

For Asher, he would need to undergo a Fontan procedure to redirect blood flow, with the first step in this being surgery 30-hours after birth, a huge emotional undertaking for the new parents.

"We had been connected with one of the Centre's psychologists and that has been so valuable for us," Ms Levingston said. "We started the process before Asher was born. It's a traumatic, crazy ride and you're learning on the fly. We wanted to be in our best frame of mind to answer questions and understand what was happening for Asher."

Although Asher's tiny body is already covered in multiple surgery scars, the toddler's drive to learn and eagerness to play with his six-month-old sister Hazel are positive developmental signs.

Professor Nadine Kasparian leads two teams, one at Sydney’s Heart Centre for Children and one at the Center for Heart Disease and Mental Health at Cincinnati Children’s Hospital in the US. Picture: Supplied
Professor Nadine Kasparian leads two teams, one at Sydney’s Heart Centre for Children and one at the Center for Heart Disease and Mental Health at Cincinnati Children’s Hospital in the US. Picture: Supplied

Head of psychology at the Heart Centre for Children Professor Nadine Kasparian conducts research - partly funded by the Heart Foundation - to improve the outcomes for families of children with heart disease.

"One of our goals is to support families from the moment of their baby's diagnosis through treatment and transitions, so that they don't feel so alone and afraid," Prof Kasparian said.

"The evidence shows that without support, patients, parents, and brothers and sisters are more likely to develop anxiety, depression, and even post-traumatic stress. Our work is really trying to find ways to prevent these outcomes, and support children and families throughout this difficult and frightening experience.

"When I started working in paediatrics 12 years ago, heart centres didn't include psychologists or mental health care. With the visionary support of organisations like the Heart Foundation, we've completely changed this. My team now provides care for hundreds of families every year.

"Together, we're passionate about making sure children with heart disease have access to specialised mental health care, at the right time, in the right place, so that no child 'falls through the cracks'."

News Corp Australia has partnered with The Heart Foundation to help make heart disease history. Visit Hand on Heart and help save Australian lives.

 

 

Originally published as 'Our baby was born with heart disease'