• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
  • Skip to footer
Donate now
  • About Tiny Tickers
  • Media Centre
  • Contact Us
Tiny Tickers

Tiny Tickers

Donate now
  • Support & Info
        • Support & Info

          Wherever you are on your journey, we’re here to offer the support and information you need.

          Find out more
        • What is Congenital Heart Disease?
        • Family Support
        • Are you pregnant?
        • Are you pregnant?
        • Just had a baby?
        • Has your baby got a heart defect?
        • Think HEART
        • Bereavement
        • Useful Resources
  • Professionals
        • Professionals

          We are here to help healthcare professionals improve the detection and treatment of congenital heart defects.

          Find out more
        • Sonographer Cardiac Training
          Our trainer, Niki, with sonographers from Russell Hall Hospital
        • Training services
        • Tiny Tickers' Yorkshire Sonographer Training Project to detect heart conditions
        • Training Resources
        • Cardiac Resources
        • The first Tiny Tickers funded pulse oximetry machine, at Good Hope Hospital
        • Pulse Oximetry Resources
        • Think HEART & Think 20
        • Resources Order Form
  • Get Involved
        • Get Involved

          Whatever your skills and interests, there is a way for you to make a difference to babies with heart problems.

          Find out more
        • Donate
        • Donate
        • Give a gift in your will
        • Our Appeals
        • Challenge events
        • Corporate Support
        • Fundraise
        • Share Your story
        • Play our lottery
  • Blogs and News
  • Your Stories
  • About Tiny Tickers
        • Our Work
        • Our Plans & Ambitions
        • How We Are Funded
        • Meet Team Tiny Tickers
        • Join Our Team
        • Our Values
        • Tiny Tickers’ Annual Reports
  • Media Centre
        • Brand Guidelines
        • CHD Statistics and Research
        • Family Stories
  • Contact Us
You are here: Home / Your Stories / Rory’s story

Rory’s story

9th August 2017 in Your StoriesDouble Outlet Right Ventricle transposition of the great arteries

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!”

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)

Related

Primary Sidebar

Blogs

  • The Hebridean Way is “mostly flat”
  • The journey of a heart parent
  • Sandie and Sonny are running for tiny hearts
  • Top Ten Fundraising Ideas For Kids
  • How our pulse oximetry project is saving lives
See all Blogs

Your Stories

  • Harrison’s Story
  • SVT and Aortic Stenosis: Arthur’s Story
  • VSD (Ventricular Septal Defect): George’s Story
  • Patent Ductus Arteriosus (PDA) and Aortic Stenosis: Emilia’s Story
  • Our heart defects: A father and son’s story
See all Your Stories

News

  • The Congenital Heart Disease Priority Setting Partnership: a national strategy to address priorities for children and adults with CHD
  • Tiny Tickers places its 500th pulse oximetry machine
  • Make Some Noise for tiny hearts
  • Amazon Smile Update 2023
  • INEOS staff cycle miles for tiny hearts
See all News

More about...

3vt (1) 20 week scan (1) Adult CHD Stories (6) ASD (13) AVSD (8) cardiac (1) Coarctation of the Aorta (36) collapsed aortic valve (1) congenital heart defects (3) congenital heart disease (3) Congenitally Corrected Transposition (4) Critical Aortic Stenosis (4) Double Outlet Right Ventricle (5) Ebstein's Anomoly (2) hypoplastic aortic arch (3) hypoplastic left heart syndrome (8) hypoplastic right heart syndrome (2) Loss (23) Mitral Valve Regurgitation (1) nominate (1) Parents Blog (15) Patent Ductus Arteriosis (3) PDA (2) pulmonary atresia (6) pulmonary stenosis (2) Pulmonary Valve Stenosis (2) research (1) shone's complex (1) sonographers (2) sonographer training (2) support (1) Supraventricular Tachycardia (3) SVT (1) TAPVC (1) Test for Tommy (5) Tetralogy of Fallot (22) tiny hearts (1) Total Anomalous Pulmonary Venous Connection (TAPVC) (1) transposition of the great arteries (44) tricuspid atresia (2) Truncus Arteriosus (4) Vlogs (2) VSD (40) win (1) yorkshire (1)

Footer

  • Facebook
  • Twitter
  • Instagram

Make a donation

Help us provide a better start for tiny hearts. Make a single or regular donations to help babies with heart defects have a fighting chance.

Donate now

Subscribe to our newsletter

You can change your email preferences at any time. Read how we keep your data safe in our Privacy Policy. 

  • Accessibility
  • Privacy policy
  • Terms and conditions
  • Fundraising Complaints Policy

© 2023 Tiny Tickers • Registered Charity No: 1078114

 

Loading Comments...
 

You must be logged in to post a comment.