• 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 / Transposition Of The Great Arteries – Billy’s Story

Transposition Of The Great Arteries – Billy’s Story

9th January 2017 in Your Storiestransposition of the great arteries

Billy was diagnosed with Transposition of the Great Arteries at his mum, Rebecca’s, 20 week scan. Here she tells their inspiring story:

Transposition-Of-The-Great-Arteries-Billy‘At my 20 week scan we were informed our baby had Transposition of the Great Arteries (TGA), an unusual condition affecting 1 in 10,000 babies. We were immediately referred to the cardiology team at the John Radcliffe hospital in Oxford, where they confirmed diagnosis.

From this point onwards my pregnancy became a whirlwind of appointments and scans…it stole a lot of the joy for me and my family.

We had a planned induction booked for the 10th may 2016, at 39+1 days gestation, but our little man wasn’t hanging around and arrived at 7.30am on Monday 9th may 2016. I had the briefest of cuddles before they took him off to stabilise him and start him on the lifesaving medicine he required.

Surgery

The first week of his life was horrendous. We learnt things that no first-time parent- let alone any parent – should know how to do. This included how to pull our little one out of an apnea.

At seven days old he was taken to theatre. This should have been a ‘simple’ four or five hour operation. However, our son was gone for 13 hours and had to be resuscitated twice. His heart simply failed to start after he was taken off the bypass machine. We were told he wasn’t going to make it.

Transposition-Of-The-Great-Arteries-BillyTwo hours later, we were told that he had miraculously come around and he was taken to PICU. We saw him for the first time in 14 hours surrounded by doctors and nurses, with an ECMO machine set up beside him ‘just in case’. It was the longest and scariest night of my life.

Our son’s chest was left open for seven days due to horrendous swelling. Seeing him lying there so helpless and not being able to hold him or comfort him was terrible. I can’t explain the helplessness. After nine very long days I got my first cuddle and you’ve never seen a happier woman! The next day he was taken back to the high dependency unit and we were on our long slow road to recovery.

Day by day our son got stronger, although we took three steps forward and two steps back for a long time. Our biggest struggle was establishing feeding.  Having been tube fed since day one, he had no concept of sucking and swallowing and unfortunately, I was unable to breast feed.  Eventually he got the hang of bottle feeding.

Transposition of the Great Arteries BillyGoing Home

We were released from hospital when Billy was one month and one day old..and we haven’t looked back! My little boy is now two years old and loving life! We have regular cardiology check ups at our local hospital and have seen various other teams to ensure he’s developing as he should. Every day I’m thankful for this gorgeous happy boy, I couldn’t be prouder!

Early Detection Of Transposition Of The Great Arteries

TGA is only picked up in roughly 1 out of every 3 cases. We were extremely lucky as the ultrasound technicians had undergone training a week before my scan. Many babies with TGA will have a secondary heart condition and many have a VSD, including Billy. As a result a lot of babies with TGA are sent home undiagnosed.

We were lucky we had a specialised team around us when Billy was born and that he received the treatment he required straight away. It also gave us time to prepare for his arrival…though nothing quite prepares you for the reality.

My message to other parents of heart babies is: keep strong – our heart warriors are fighters!

Find out more about Transposition of the Great Arteries here


Transposition of the Great Arteries BillyOn the 20th December 2018 the Christmas lights of Seven Dials in Covent Garden will flicker in time to Billy’s heartbeat in order to raise funds and awareness of Tiny Tickers’ work. Find out more about the Twinkle Twinkle Little Heart Appeal here.

Donate Now

 

  • 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.