Transposition of the Great Arteries: Millie’s Story

Millie’s heart condition, transposition of the great arteries (TGA), was diagnosed before she was born. Here, her mum Kimberley shares their story:

I want to share our story to help other parents going through the same thing. Reading these stories gave us so much hope and reassurance.

We found out during our 20 week scan that our daughter had transposition of the great arteries (TGA). We were absolutely devastated, and so worried about what was to come. However, the cardiologist reassured us that she would hopefully just need one surgery and would go on to lead a completely normal life.

At 14.41 on 25th April 2022 our beautiful girl, Millie, was born via a planned C-section. We were so delighted to hear her cry and see that she was so pink, as we’d been warned she may be blue and may not cry straight away.

The team whisked her away to NICU where she had a heart scan. The heart scan showed that she also had a hole in her heart (ASD) and therefore wouldn’t require the balloon procedure we’d been told she may need. She was given a medication called prostin to help with the blood circulation prior to her surgery.

Two days later, Millie was moved to PICU at the children’s hospital where she was so well looked after. On the 4th May 2022, at nine days old, Millie was taken for her switch operation. Kissing goodbye to her was the hardest thing we have ever done, but we knew she needed this operation in order to survive.

After eight agonising hours, the surgeon called and informed us the surgery had been a success. Unfortunately, she had had an episode of SVT (abnormally high heart rate) which they needed to keep their eye on, but he was happy with her heat anatomy! She was back on PICU and we made our way back to the hospital to see her.

Nothing can prepare you for seeing your tiny baby after such a huge operation; it was heart breaking and we haven’t even shown our closest family the photos. The doctors and nurses were just fantastic, they did their best to reassure us and explain everything.

During the next two to three days, Millie was extubated and many wires and leads were removed. We could see her beautiful face once again as the swelling had subsided. Her recovery was amazing and much quicker than we thought.

Just three days post-op, she was moved from PICU to the ward and we were then moved back to our local hospital. The only issue was her gaining weight. She was discharged on 15th May – just 11 days after her open heart surgery. We were ecstatic to get her home and introduce her to the rest of her family!

Unfortunately, a few days later, Millie became very unwell at home. We took her back to our local hospital and they informed us they were treating her for sepsis. This was probably the worst day of all. We were told she was extremely unwell and that the first 24 hours were critical. Thankfully after the antibiotics began to work, Millie became much better, however the wound was still very infected and she was taken back into specialist care.

Due to the severity of the infection, she required a long course of antibiotics, so she needed a specific long line which was inserted in theatre, under another general anaesthetic. Whilst in theatre the surgeon had a clean out of the wound too.

Millie remained in hospital for a further two weeks to complete the course of antibiotics, but finally on 8th June 2022 we were able to bring her home – again!

Millie’s recovery from the switch operation and also the sepsis has been fantastic, to look at her now, you’d never know what she has been through. We really couldn’t be any prouder of her.

We’re forever indebted to the wonderful surgeon and the entire team and Bristol Children’s; they saved Millie’s life not once but twice.

If you’re reading this because you’ve recently received the same diagnosis, I really hope this has helped you. It’s a journey filled with some lows but also many many highs – Millie is now a beautiful, funny, chunky eight month old and we couldn’t love her more.

Find out more about transposition of the great arteries (TGA) here.