Patent ductus arteriosus (PDA): Fflur’s Story

Fflur’s heart condition, patent ductus arteriosus (PDA), wasn’t diagnosed until she was six weeks old and already in heart failure. Her mum, Gwenllian, tells their story:

Fflur was diagnosed with a large patent ductus arteriosus (PDA) at six weeks old.

She was born at 38 weeks and all seemed well to begin with. After a few weeks, she wasn’t gaining weight as quickly as she should. I was exclusively breastfeeding and waking her up every couple of hours to feed! She wasn’t waking up during the day to feed, but this was assumed to be because of the heatwave. I was told that there might be an issue with my milk supply or with the latch.

I frantically Googled feeding techniques and asked friends for advice. I started eating oats and expressing to increase my milk supply. One senior Health Visitor asked whether I would be happy to top up with formula, which I refused. It was a good thing I did refuse, as otherwise Fflur wouldn’t have been diagnosed until her eight week check-up.

At six weeks, Fflur had gained weight and we thought we were on the right track. But Fflur had been coughing during feeds and a different Health Visitor offered to observe her feeding. She noticed Fflur was working quite hard to breathe and referred us to the GP that afternoon.

The GP detected a heart murmur and we were sent to the local hospital. Fortunately, one of the doctors working that day had an interest in cardiology and had trained to use the echocardiogram. It was at that point, Fflur was diagnosed with a large PDA. Her heart was enlarged as was her liver. She was in heart failure. This came as a huge shock to us at the time.

We stayed in our local hospital for a week, while Fflur was stabilised and placed on medication to help her. We decided, with the dietician, to continue with breastfeeding and to top her up with high calorie feed via a NG tube.

Since then, we have had one hospital stay due to bronchiolitis, which affected Fflur quite badly. We have gotten to know the community nursing team, health visitors and hospital staff quite well with all the blood tests, weigh-ins and NG tube reinsertion! The work they do is amazing and I cannot praise them enough.

Fflur is due to have treatment via catheterization within the next month, now that she is big enough for the procedure. Hopefully everything will go smoothly with this procedure and although I’m not looking forward to it (the thought of them operating on my six month old baby is terrifying), I’m grateful that they can do something to make her better.

If a pulse oximitery test had been carried out before discharging us from hospital, Flur’s condition may have been picked up earlier. Had we been more aware of the signs to look out for, I think she could have been diagnosed earlier. You receive so much information in your antenatal pack but nothing on congenital heart disease (CHD). Knowing what signs to look out for could save lives.

It would also be great to see some resources available thorough the medium of Welsh, which is our first language and being able to receive information in the language you are most comfortable with is always helpful.

Our Think HEART campaign teaches parents the five key signs a baby may have an undiagnosed heart condition. Find out more here.