Transposition of the Great Arteries: William’s Story

Emma found out at her 20-week scan that her baby had a serious heart condition, Transposition of the Great Arteries (TGA). This is William’s story — shared to bring hope and strength to other heart families:

(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)

It was a bit of a shock when we first discovered we were expecting William, so soon after his sister Louise was born — she had only turned one a few months before. Nevertheless, we were secretly happy but waited for the 12-week scan before letting family members and friends know our ‘surprise’ news.

The 12-week scan went fine — absolutely no issues — the only shocking factor being his predicted due date, which was only four days before our daughter’s second birthday! Who would have planned that?

After this, we began to tell people, and it started to become common knowledge that I was expecting again. We’ve never really been bothered about gender — both my husband and I always said, “As long as the baby is healthy, we really don’t mind.” The way I saw it, either would be a win-win… if the baby was another girl, great, we had most of my daughter’s things to pass down. If it was a boy, we’d get to go shopping!

The day of the 20-week scan arrived. As far as we knew going in, it was just a routine appointment — another chance to see our baby and check on their growth. It didn’t even cross my mind that anything might be wrong. We went into the scan room and I was asked to get on the bed and lift my top while the jelly was applied — the usual.

Seeing our little baby again was magical. As the sonographer began her checks, everything still seemed to be going well — everything was forming perfectly: the brain, back, arms, legs. Then she moved to the heart. We heard a beautiful, strong heartbeat, and at first, everything still seemed okay. But then she scanned over the area again, enlarging the screen to see what she needed to see. At first, she dismissed it as the baby being in a strange position, and moved on to other measurements, saying she would return to it later.

She did. But baby was still being a little monkey and not playing ball. The sonographer got me to stand up and move around in the hope that this would give her a better view. It didn’t work. I don’t know why, but in that instant, I just knew something wasn’t right. She hadn’t said anything — but I could feel it.

After a few moments, we were asked if we could take a seat outside while the sonographer discussed the scan with a colleague. This wasn’t what we were expecting at all. Just before the jelly was cleared from my tummy, my husband asked if it was possible to know the sex of the baby. We had all been so focused on the heart that we hadn’t even asked. After another look, we were told we were expecting a baby boy. It was hard to be excited, given how I was feeling at the time — I just knew something was wrong.

We waited outside, then were led to a quiet room and told a midwife would be with us shortly. That confirmed it. There was definitely something wrong with our baby — nurses don’t send you to quiet rooms for no reason.

It was there that we were told we had been booked in for another scan, this time a foetal cardiac scan at our local children’s heart specialist hospital. Although obviously worried, we tried to stay calm for the sake of our daughter at home, and held onto the hope that perhaps he had just been in an awkward position.

Unfortunately, this wasn’t the case. At that appointment, we were told that our baby boy had transposition of the great arteries (TGA). In that moment, our hearts sank. We didn’t know anything about TGA — we had never even heard of it. Naturally, we began to assume the worst. You know things like this happen, but never in a million years do you expect to be on the receiving end of that kind of news.

We were told that our son would need surgery after birth — in fact, a second surgery would likely follow within a week or two. Driving home, we were numb. Questions and thoughts swirled in our heads. Why us? What had we done wrong?

Of course, we had done nothing wrong. Our boy was always going to have this condition — it’s just how it was.

I remember sitting silently in the car on the way home, stunned. The thing that really made me cry wasn’t actually the diagnosis — it was the fact that our son would more than likely be in hospital on our daughter’s birthday. I don’t know why that affected me so much, but it did.

The rest of my pregnancy felt overshadowed by the diagnosis. I couldn’t fully relax or enjoy the time — the TGA was always hanging over us. The foetal cardiac team were fantastic, though. After the diagnosis, we had regular monthly scans just to make sure everything was okay (or as okay as it could be).

As my due date drew closer, a plan was put in place. After discussion, I decided to have a C-section — I saw it as the safest option. Everyone would be on standby to give William the attention he needed, and that, to me, was the most important thing. In that moment, rightly or wrongly, I didn’t care about myself. That little boy — who was safe inside me — would soon have the fight of his life, and I wanted to make sure he was as prepared and looked after as possible.

William came into the world via C-section at 11:36am. We knew we wouldn’t have the usual post-birth cuddles with him, which was hard, but just seeing him for the first time and knowing that physically he was okay was a blessing. He cried too, which was fantastic, as we were told he might not. He was very purple and hooked up straight away to a ventilator and monitors. I saw him again while in recovery and was able to touch his little hand before he was taken to the PCICU. I didn’t see him again until after 9pm that evening.

Needing to recover myself, William became my motivation to get up and move as soon as I could. Seeing him in the bed in the PCICU is a bit of a blur from that first day. Seeing our son — so small, covered in wires — was very hard.

Despite mentally preparing for what William would be going through, actually seeing it was like an out-of-body experience, as if it was happening to someone else.

That evening, he had a balloon septostomy, which was a success. It allowed William’s blood to mix better, and instead of being a dark purple, he became a healthier pink. He had passed his first hurdle.

The days that followed in the PCICU seemed long — and yet also flew by. We sat with William, desperately wanting to care for him like any newborn, but we felt helpless. There was nothing we could do except let him know he was loved and that we were there.

The day of William’s switch operation arrived. The date had been set a few days before, as William had been doing well. Although we knew the surgery would happen sooner rather than later, it still felt far too soon — he was only six days old. It felt so surreal to think of someone so tiny going through something so major.

It was the longest day of our lives and the most anxious we have ever felt. That morning, we sat with him, reminding ourselves that this day would be harder for us than for him. Thankfully, he had no idea what was coming.

When he was finally taken to surgery, time stood still. Luckily, we lived only about 20 minutes from the hospital, so we went home to try and rest — easier said than done. Somehow, we managed to remain calm for the sake of Louise, our daughter. She helped us more than she’ll ever know. Although she knew her baby brother had a poorly heart, the innocence of her understanding helped to keep us grounded.

When William came out of surgery, it was a relief to know it had all been a success. He looked different — puffier than before — but we were told this was normal due to the fluids he’d been given. He was hooked up to even more wires and medication, with tape all around his face. But the most important thing was that he was alive — and now the aim was recovery and bringing him home.

The rest of his stay in hospital wasn’t without challenges. Ten days after the surgery, he was referred to ENT because he had a silent cry. William was eventually diagnosed with left vocal cord palsy — likely caused by nerve damage during surgery. Because of this, his swallow was deemed unsafe, and he had to be NG tube fed.

On top of that, when he was moved to the cardiac ward, he picked up an infection and needed a course of antibiotics. Despite all this, he responded and recovered well — and by 31st January, he was finally able to come home for good.

Now, fast forward six months, and William is going from strength to strength!

He’s recently had his six-month cardiac review, which went excellently. He’s doing amazingly well and doesn’t need to be seen again until he turns one.

William decided he was going to be feeding tube–free after recently pulling out his NG tube. He’s since done so well with his feeds and has been given the all-clear by the Speech and Language team to continue monitoring him without the tube. We’ve also been given the go-ahead to start weaning him onto solids.

Despite everything William has been through in his short life, he is such a happy little chap — always smiling and causing trouble (mainly by pulling at his NG tube or his sister’s hair!).

Reading about other heart families brought us a great deal of comfort in the early days of William’s diagnosis and recovery. We only hope that by sharing his story, we can offer the same comfort and strength to others now walking a similar path.