Geelong’s Leah Kolega has a lot on her plate as a mum of four kids, including two boys living with childhood-onset heart disease (CoHD).
Doctors first noticed something wrong with Ms Kolega’s youngest son Connor’s heart when she was 34 weeks pregnant.
“I had a specialised ultrasound, and the doctor decided to check on the baby before he just stopped, looked at us and told us that…there was something wrong with my baby’s heart,” she said.
“He was born floppy, blue and very swollen, so the doctors pretty much held him up and then took him to another room where they tried to revive him.
“He was seven hours old when he had his first open heart surgery…and we were in and out of the hospital for the majority of the first two years of his life.
“He had about eight conditions to do with his heart, and because he had more than three, doctors said that they wanted to do some genetic testing for the rest of the family.
“That’s when we found out about his older brother Thomas’s heart condition, so we actually didn’t know anything about it until then.”
Connor (5) and Thomas (10) both live with CoHD and have a bicuspid aortic valve (a common congenital heart defect) and aortic stenosis (a serious heart condition restricting blood flow from the heart to the body), with Connor’s condition significantly more complex.
“It has been a whirlwind, but when you fast forward to today, Connor has come so far, and it is unbelievable,” Ms Kolega said.
“It’s been a learning experience, and before Connor was born, we had no idea how common it (CoHD) is and how many kids are affected.”
Congenital Heart Defect Awareness Week runs from 7-14 February, leading up to Congenital Heart Defect Awareness Day on Saturday.
The annual Sweethearts for HeartKids campaign will continue throughout this month to help charity HeartKids increase access to essential support services for families affected by CoHD.
Visit heartkids.org.au/sweethearts-for-heartkids for more information or to donate to Sweethearts for HeartKids.
