Tetralogy of Fallot: Romeo’s Story

Romeo was diagnosed with Tetralogy of Fallot (TOF) at his mum’s 20 week scan. Here, Suzie tells their story:

At our 20 week scan, Romeo was diagnosed with Tetralogy of Fallot (TOF). This was an extremely scary time for us and the rest of our pregnancy was full of worry for the unknown. 

We were induced at 38 weeks as Romeo was not growing properly. At birth he weighed 4lb 5oz, but was healthy and didn’t need any medical support. 

At three and a half months old, Romeo stopped feeding and an NG tube was placed due to weight loss. Doctors later discovered he was in heart failure due to severe tricuspid regurgitation and an enlarged heart. It was time for his full TOF repair. The surgery was a success and he was out of PICU just two days later. 

Unfortunately, eight months on, Romeo’s heart is still very enlarged. He had a cardiac catheter to check the pressures in his heart, as his pulmonary valve now has a severe leak. Doctors discovered discovered his heart is very stiff. He went in to complete heart block and suffered four cardiac arrests. He has now had a permanent pacemaker fitted and has been diagnosed with Restrictive Cardiomyopathy.

Our next steps will be to meet with the transplant team at Great Ormond Street to discuss the next stages of Romeo’s treatment. 

We are so incredibly proud of Romeo and his strength inspires us every day. 

Find out more about Tetralogy of Fallot here.