Rory’s story

Identified at his 20-week scan, Rory was diagnosed with Transposition of the Great Arteries, Ventricular Septal Defect and Double Outlet of the Right Ventricle he also had a Pulmonary Stenosis and Dextrocardia. 

“We discovered our second son Rory had heart problems at the 20-week scan. To say it was a shock is an understatement! You never think you’re going to be the statistic that is told it is your child who has problems. To make matters worse we had taken our 2-year-old son with us, so whilst he was itching to touch all the medical equipment and pull emergency alarms me and my partner were in tears as 3 sonographers tried to diagnose exactly what was wrong.

After about 20 minutes between them they said they could see arteries were in the wrong place and a big Ventricular Septal Defect (hole in the heart) but didn’t want to confirm more as they wanted us to be seen by someone more specialised.

We were then referred straight to see a Fetal Heart Cardiologist (who was amazing), he then tried to get an idea of the exact problems and the outcome for birth…turns out its harder than you think! We were told he had Transposition of the Great Arteries, Ventricular Septal Defect and Double Outlet of the Right Ventricle.

From the first visit to see our Doctor we transferred to a specialist hospital and from then onwards had multiple check up’s throughout the pregnancy, until Rory arrived in this world on January 31st 2016.

It was decided I would be induced because no-one was certain what state Rory would be born in and they wanted a space on NICU just for him. Throughout our journey we told to prepare for things him not being be able to breathe properly, may having to have open heart surgery straight away, that we may have to spend weeks in hospital, that he might not be able to feed so may need a feeding tube. Unless you’ve been in a similar situation yourself you cannot imagine what a frightening and a truly heart-breaking time it was. The whole pregnancy was traumatic but the support from our family, friends and all the incredible NHS staff was a godsend!

As soon as Rory was born he was whisked away for scans and tests. It was then determined that along with Transposition of the Great Arteries, Ventricular Septal Defect and Double Outlet of the Right Ventricle he also had a Pulmonary Stenosis and Dextrocardia.

And to say he defied all expectations is a light way to put it! 

For 20 weeks we expected and imagined the worst…to find that it didn’t happen (so far touch wood)!

Because all Rory’s conditions balance each other out (Congenitally Corrected Heart Disease) it meant that after spending 4 days and nights observation at St Marys we were free to take him home and that at 18 months old he hasn’t had any corrective surgery at all! He’s met all his milestones so far and looking at him you would not know his heart is all wired up wrong. The only indicators are that he tires easily and goes blue easily as his circulation is poor. He’s also had a couple of hospital admissions (one which was Bronchiolitis), because he’s not able to shake off virus’s as well as heart healthy children.

So post birth, with him maintaining well, we went from scans and consultation visits every 2 weeks, to every 6 weeks, to every 12 weeks, to now every 6 months. He still has regular saturation checks from the community nurses every 2 weeks but they average out between 92-94%.

With regards to the future we don’t know exactly what is going to happen. We were told they see half a dozen cases each year of what Rory has and they are hopeful that he can continue as he is doing for the future but the likelihood is that in the next couple years he will require surgery (they assume on his Pulmonary Stenosis) to help get enough oxygen round his heart.

Rory is such a bright, happy and inspiring little boy who we are lucky to call our son and without the work of heart charities, their research and training I wonder how different life would be!

Although I have no doubt he would still be the most mischievous cheeky little thing!”