My baby’s heart defects: Lily’s Story

It wasn’t until she was seven weeks old, and in heart failure, that Lily was diagnosed with serious heart defects. Here is her story, told by her mum, Joanne:

On the 13th September, at seven weeks old, Lily was diagnosed with heart failure. Rushed to ICU, cardiologists discovered she had Shone’s Complex, a collapsed aortic valve, hypoplastic left side, and a large VSD (hole of about 1cm). Her lungs were like a wet sponge and she was choosing to breathe over eat.

On the 16th September, she had open heart surgery to repair the valve and a PA band put in place to reduce the blood rushing to her lungs.

She will need at least two further surgeries (to loosen the band and to repair the hole) and she may, in the future, need a ‘Fontan procedure’ which aims to direct oxygenated blood from her lungs to her body without the need to use the left side of her heart.

As first time parents, we struggled at home for the first seven weeks, knowing something was wrong, but GPs told us it was likely reflux or a milk allergy. As Lily was losing weight, we were told to get milk into her in any way possible – because of this Lily now won’t drink milk and has to be fed through a nasogastric tube until she’s at least one year old.

We have been thrust into the world of medical terminology, meetings with cardiologists and surgeons, and learning to feed her via tube at home. It’s been, without doubt, the toughest time of our lives and, at times, we’ve doubted our abilities to do this.

Had we known Lily had congenital heart disease (CHD), we would never have had to struggle alone at home for seven weeks and I strongly believe Lily wouldn’t have the feeding aversion she now has.

Though early diagnosis wouldn’t have changed Lily’s diagnosis, it would have made us more prepared. She may not remember that first seven weeks and that fateful scan in the Children’s Assessment Unit, but we will, forever.

At nine months old, Lily is on the 75th centile for weight, after plummeting to the 0.4th. Her heart is operating ‘normally’ for now. She also started nursery recently, after the staff undertook training to tube feed her, which was something we were worried about.

Find out about different types of congenital heart defects here.