Coarctation of the Aorta, VSD & ASD: Pippa’s Story

Pippa’s congenital heart defects were diagnosed when she was six weeks old. Here, her mum, Natalie, tells their story:

After the most wonderful pregnancy and a fairly easy birth, we were blessed with our first baby – a beautiful girl, Pippa.

To look at, she was perfection personified. A full head of hair, big dark eyes and a smile to melt even the coldest of hearts.

But, at just over six weeks old, after gaining no weight at all, we were told that Pippa had a hole in her heart. We found out she was suffering from a large VSD (ventricular septal defect), an ASD (atrial septal defect) and coarctation of the aorta. Our world came crashing down and we had so many questions. How could our perfect little girl be so unwell? Why were we only now finding out? Could this have been detected in pregnancy? Why had no one picked up on this after her birth?

Neither family have any history of congenital heart defects (CHDs), so as her Mum, I felt like it must have been my fault that my tiny girl was so ill! I convinced myself it must have been something I had done during pregnancy that has caused this. I was reassured that this wasn’t the case and, unfortunately, it is something that just happens.

After weeks of tests and scans, and at just 3.5kg, Pippa had her coarctation repaired. We hoped this would ease the stress her heart was under and help her to put on weight to be in a better position to face open heart surgery to fix the VSD and ASD.

It had the opposite effect. We were devastated. Pippa had never looked worse and our little girl returned to ICU and was intubated over Christmas.

Our first Christmas together, not being able to hold her or feed her was devastating. All we could do was sit and wait. On the 28th December, Pippa had open heart surgery to close the VSD and ASD.

Watching our tiny baby being wheeled from ICU to theatre, knowing she was already so unwell, was heart-breaking. It’s something no parent should have to go through!

Thankfully, her operation was a success, and just seven days later we were sent home.

In the two months since surgery, Pippa has managed to relearn how to eat and her NG tube has been removed. Giving her that first bottle after weeks of tube feeding was the best feeling. She is now thriving and back to being the happiest little girl.

Early detection of these conditions is crucial. Pippa’s symptoms were so obvious – if we knew what we were looking for! She wasn’t a great eater, she was pale and often clammy.

From the day they are born, we are inundated with information on safe sleeping and feeding, but we were never once told to look for the signs of congenital heart disease (CHD)! Knowing that so many babies are being sent home undiagnosed is terrifying and it’s heart-breaking to know that not every child will have a success story like Pippa.

The work Tiny Tickers is doing to change this is second-to-none. Training sonographers to detect CHD should be standard. It shouldn’t be down to the work of this fantastic charity, but it is what it is. We hope we can support Tiny Tickers to help change the life of even just one family.

Knowing how to Think HEART can save a life. Learn how here.