Transposition of the Great Arteries: Zelda’s Story

Zelda’s heart condition, Transposition of the Great Arteries (TGA) was detected at her 20 week scan. Here her mum, Olivia, shares their story:

It was our 20 week scan. We already knew we were having a little girl so we were just excited to see her again.

The sonographer was super chatty and full of jokes. So the moment she went quiet I knew something was up. She didn’t say much, just that she could see something wrong with the baby’s heart.

She asked us to wait in another room while she gathered some things. I remember thinking to myself… it will be nothing to worry about. Just a murmur or something. People live with things like this all the time.

The sonographer came back into the little office to explain that our daughter had a congenital heart defect called Transposition of the Great Arteries (TGA). But that meant nothing to me at the time. Then she explained that our daughter would have to have open heart surgery within the first two weeks of her life or she wouldn’t survive. And this meant I had to give birth in Leeds.

I was so overwhelmed I can’t remember much else from that day. The following day I was sent to Leeds to see the congenital heart disease (CHD) specialist, who confirmed Zelda’s condition and explained everything a little better.

So throughout pregnancy we were back and forth from Hull to Leeds, having God knows how many scans and checks.

Leeds General, 2:07pm 29th July 2019. The doctor held a baby girl over the little curtain and congratulated me and Joe! I couldn’t help but notice how blue she was! I was so worried. I told Joe to go with our daughter and not to worry about me. I saw our little baby on a table with a oxygen mask over her face, getting wheeled out. The doctors and nurses were running around and looked so busy. I knew it wasn’t good, I knew it was a race against time.

I was stitched up and back in recovery, without my baby. Joe came to me half an hour later with a photo of my little girl on a ventilator and lots of wires all over her. He told me not to worry, she was okay. And that she had had an arterial septostomy.

Six hours passed before I got to see her. There she was… Zelda. Our heart warrior.

On our ninth night in hospital, we met Zelda’s surgeon. She explained that it was time… Zelda’s oxygen levels were in the 60s. She told us that without this operation Zelda would have a very short future.

The next morning, 2am, I couldn’t sleep. Knowing today was the day. So we headed down to Zelda’s ward. We sat by her bed until 12 o’clock. When we walked her down to theatre. I kissed her hand and said night night. For all I knew that might have been the last time she ever heard my voice. Her little muffled screams through the mask as she went to sleep were truly heart shattering.

The longest day ever. We sobbed most of the day. We went back to our room and tried to get some sleep. Later that evening we got the call to say Zelda was out of surgery and all went well! I remember thinking, if all goes well we could be home in two weeks!

Zelda had her chest closed the day after surgery. She then went on to have a couple of bumpy days. But over all she made a speedy recovery! We got to take our little girl home just five days after surgery (four days after having her chest closed).

And now… we have a happy little one year old!!!!

Find out more about Transposition of the Great Arteries (TGA) here.