Hannah's congenital heart disease

14 February 2016        

Category: Research

Hannah Phillips

In aid of Congenital Heart Defects Awareness Day, Hannah tells us her story of how her congenital condition has become her greatest strength. 

Congenital heart defects are structural abnormalities of the heart which are present at birth. Hannah Phillips, a 20 year old from Lewisham, was born with a congenital condition called Ebstein’s anomaly, and other complications such as a hole in the upper chambers of the heart (atrial septal defect). 

What is Ebstein’s anomaly?

Ebstein’s anomaly is a condition where the valve which directs blood through the right side of the heart doesn’t work properly. Over time, the heart works harder to compensate for this dysfunction, which can lead to enlargement of the heart muscle and heart failure. 

Hannah’s first surgery

When Hannah was just nine years old, she had her first open heart surgery to repair her faulty valve, and to patch the hole in her heart. Unfortunately during her surgery, Hannah developed arrhythmias, or irregular heartbeats. To help her heart beat regularly, Hannah was fitted with a pacemaker. 

Unwavering friendshipsHannah Phillips and friends

Through sharing their stories and experiences, Hannah became good friends with Cissy, 16, and Katie, 18. Both Cissy and Katie were also born with congenital heart conditions. All three girls now have pacemakers and remain a strong support system for each other. 

When asked about her friends, Hannah said: “They are my core strength. The relationships and friendships you make in hospital are the most unique – we have a unique understanding of each other. The phrase ‘true friendship knows no bounds’ explains us in a nutshell. My illness has become my greatest gift.”

Using her condition as a strength

Hannah decided to turn her condition into a positive, and aims to improve the lives of others with heart conditions. She’s developed an App for young patients, creating a unique community for them to share their experiences. Hannah also has hopes of developing a range of products to enhance heart patients’ hospital stays. She’s even written a play about her experiences, which is showing at next year’s Edinburgh Fringe Festival.

To encourage more people to talk about their conditions, Hannah created a resource called My Story/Their Story, which won a British Medical Association award -watch her video below.  

Read more about Hannah’s experience on her blog - Hannah’s Heartbeat.

Research is the answer

BHF Professor Bernard Keavney, at the University of Manchester, is studying the genes of families affected by congenital heart conditions like Hannah’s. Professor Keavney and colleagues are using state-of-the-art technology to screen people with congenital heart disease for genes that may underlie their condition. With this knowledge, the Manchester team aims to better prepare families on what to expect, and in the long-term, develop more effective treatments. 

Help us continue to fund pioneering research into the genetics behind congenital heart disease.