VSD: Bonnie-Rose’s Story

Bonnie-Rose was diagnosed with a VSD (hole in her heart) when she was one month old. Here, her mum Kelly tells their story:

Bonnie-Rose always struggled to feed. She would be soaked in sweat, fall asleep and could never finish her feeds. We kept taking her into the hospital, as we were so concerned, but were always sent away and told she was fine.

She was often pale and dusky in colour. Although a good weight when she was born, she soon started to lose weight and we were told she was failing to thrive.

We took Bonnie-Rose into hospital when she was one month old for something unrelated and they found a murmur.

We were asked if she struggled with feeding and we explained that she did and she was always soaked in sweat during feeds. They rushed an appointment for a echocardiogram, where a large ventricular septal defect (VSD) was found.

Bonnie-Rose was given a chest x-ray. They found her heart was enlarged and her liver was also enlarged. She had congestive heart failure and was put on two diuretics. We mentioned a NG tube, as we couldn’t get milk down her, but this was refused. She was put on high energy formula instead.

A month later, after still struggling to feed and her weight still dropping, they did put in a NG tube. Bonnie-Rose started gaining weight.

Due to the size of the VSD and the symptoms, we were told she was very likely to need open heart surgery to close the hole. However, Bonnie-Rose has started coping better. She’s not fully symptom free, but she’s doing better. Her weight is good, though she’s small in height. She does get breathless and tired quickly, and she turns mottled blue when cold. Bonnie-Rose also has a low immune system and struggles with colds and flu.

So far, she hasn’t needed surgery and she has regular echocardiograms to keep an eye on her.

Find out about different types of congenital heart defects here.