Elsie’s Story

Jade’s daughter, Elsie, was born with a number of heart defects, including tetralogy of fallot (TOF). This is their story:

My daughter Elsie, now aged 7 months, was born during the second national lockdown in November 2020. After a long and difficult induction of labour due to her growth slowing down, she was born presumably healthy.

The day after she was born, doctors detected a murmur. As my older son has tetralogy of fallot, they did an echocardiogram of her heart.

This unfortunately confirmed that she also has tetralogy of fallot, like her brother, but some other heart problems including major aortopulmonary collateral arteries (MAPCAs), patent foramen ovale (PFO) and atrial septal defect (ASD).

After they diagnosed these heart defects, they did genetic testing on Elsie, which detected a very rare genetic and chromosomal syndrome called 16p13.11 (micro duplication syndrome). This can cause a large array of complications including congenital heart disease (CHD).

Elsie was in and out of hospital prior to surgery with seizures, hyper cyanosis and viruses. She had major open heart surgery in May 2021 to help the heart function better, and will likely need more surgeries and interventions, but we couldn’t be prouder of her and how far she’s come, despite all the obstacles in her way! 

Read about different types of congenital heart defects here.