Transposition of the Great Arteries - Angus' Story

Angus was born in February 2018 with Transposition of the Great Arteries and a large VSD. Here his mum, Jane, tells their story:

“Angus’ condition was detected during our 20 week anomaly scan at Peterborough City Hospital. We noticed the sonographer was taking a long time to look at his heart, before she asked us to go for a walk. We presumed our baby wasn’t playing ball for the camera and the sonographer hoped a walk would help him reposition himself.

However, when we came back in the room, two sonographers were present and we knew something wasn’t right. The sonographers were absolutely amazing – as reassuring as they could be while also delivering the news that we needed to be seen by a speacialist quickly.

We had an appointment two days later at Great Ormond Street Fetal Medicine Department. We will never forget the echo technician saying the words, ‘Jane, there’s something wrong with your baby’s heart.’ In that moment, our world stood still and we were never quite the same again.

Angus was delivered in London at 39+2 weeks. The team that was with us and those who received him onto the NICU were absolutely brilliant. He arrived in a whirlwind (four hours!) but I was allowed a quick cuddle before they took him away for treatment.

Although Angus has a VSD, every time his heart beat, the hole was blocked by a piece of tissue within his heart. This meant there was almost no blood mixing and he was very poorly. The cardiologist from GOSH was on hand to perform the balloon septostomy and when Angus was only three hours old he was stabilised quickly. Three days later we were transformed to GOSH and on day five, Angus had his switch operation.

I remember being so scared and thinking that he seemed so stable – why did they need to cut into his precious chest? The surgeon’s harsh-but-true words brought us crashing back to reality, ‘You understand your son’s condition is incompatible with life?‘

Angus went off for surgery the following morning and by 6pm we were by his bedside in the cardiac ICU.

His journey from there was pretty smooth sailing, all things considered, and we were transferred to our local hospital in Perterborough when he was two weeks old to establish feeding. A few days later, we were discharged and went home. It seemed as though we had been away from our home and our other two wonderful boys (both had their birthdays while we were away – February is a busy month for us!) for a lifetime.

We’re delighted to say that Angus appears to be thriving. He is now a happy, chilled out, life-loving, adventuring eight-month-old. Nothing phases him and he smiles so much that I think his face must hurt by the end of each day! His heart appears to be doing just as it should and his cardiology reviews so far have been reassuring. The doctors tell us he is now a ‘normal baby’, although we will always know how special he is.

Along this crazy journey, we’ve come across so many parents who have had to deal with the terrifying ordeal of having a baby with Transposition of the Great Arteries that was not diagnosed until after birth. They have told us stories of having to watch their child become life-threateningly ill and having to leave older siblings with no warning, whilst being blue lighted to their nearest heart unit.

Although the second half of my pregnancy was incredibly hard, we feel phenomenally grateful that our son was diagnosed antenatally. He was in the best possible hands when he came into this world and needed care most. It is thanks to the work of your charity that this is possible. We know you’ve done training at Peterborough City Hospital and that may be the reason our sonographer decided to get a second opinion. So thank you. Thank you from the bottom of our hearts (the ones that were made the right way round and little Angus’ whose wasn’t!) Your work saved his life and we are eternally grateful.

We had Angus baptised recently. It was a really special day with his amazing family and friends, who have all provided tremendous and unfailing support throughout his journey. For us, his parents, we wanted to use the occasion to give thanks. Thanks to God for putting us in the right place at the right time, for coming across sonographers with the right training, for giving us hospitals like GOSH, for giving us the strength to get through it all and for blessing us with our inspirational little guy.

It seemed fitting to use Angus’ baptism to give our thanks to Tiny Tickers and GOSH. We asked guests to spare the gifts and offer a donation instead. They emptied their pockets. We are delighted to have raised £150 at the event for both charities. We hope it will support the life-saving work Tiny Tickers does every day. Whether it goes towards a pulse oximetry machine or training more sonographers, it all counts and saves babies like Gus.”