Transposition of the Great Arteries – Amaya’s Story

Amaya’s heart condition, Transposition of the Great Arteries, was detected when she 13 days old. Here her mum, Aimi, tells their story:

Transposition of the Great Arteries AmayaWhen we found out we were expecting our fourth child we were very happy, especially as it was a little girl, which meant our family would be complete with two boys and two girls.

The pregnancy went very well, all the scans were fine, and the birth was straightforward. We were home within 6 hours of Amaya being born. She was a very quiet baby, which we thought was amazing, but a little strange and she only cried a little when hungry. We thought we were lucky to have a content baby.

At midwife check-ups, we mentioned she seemed a little tired and not very alert, but they said it wasn’t anything serious. Babies usually sleep when feeding.

When Amaya was 13 days old, I got up as usual and my husband sorted the other kids for school. I looked at Amaya sleeping in her bouncy chair and noticed something didn’t seem right with her. She seemed so cold and sleepy. I phoned the midwife and then 111. They sent an ambulance as she was so young. We still didn’t think it was anything serious and off we went to A&E.

Amaya was seen immediately due to her age. The nurse watched me feed her, saw her struggling to breathe and called for the doctor. It all went crazy from there. She was rushed through to resuscitation and prepared for intensive care.

Transposition of the Great Arteries AmayaTo see over 10 doctors and nurses around your tiny baby, sticking tubes and needles into her, is something I will never forget. Amaya was taken to ICU and we waited for news. Eventually, a heart specialist came to see us and explained that Amaya was seriously ill, and she had a condition called Transposition of the Great Arteries (TGA).

We looked on blankly as he explained the way the heart should work and how Amaya’s heart was currently working. He explained that she needed an urgent procedure to allow oxygen into her body. He wanted to start the procedure immediately as she wouldn’t last if we waited for the surgeon to come from Southampton to Oxford. Of course, we agreed and waited for a lifetime for the news.

Eventually the doctor returned, along with the surgeon from Southampton, and said that the procedure had gone well, and we would now need to get her strong for her switch operation. Seeing Amaya in ICU, swollen, purple and unconscious, was the worst thing. But eventually she got stronger and seeing her open her eyes and look more like a “normal” baby was amazing.

Amaya was then moved to Southampton for her operation. Again, this was a traumatic experience due to the risks involved. Amazingly, the eight-hour operation went well, and she made a quick recovery.

Every day we are all so grateful that she is still here. It could have all ended very differently in the space of a few hours. Amaya is a lively, excitable little girl who never sits still. Looking at her now, you would never know how ill she was. Her regular checks all look good and we are only seen once a year from now on.

Early detection for heart defects is so, so important as is education for midwifes, health visitors and new mums. I had no idea that these defects even existed, and I certainly didn’t think something like this would happen to us.

Transposition of the Great Arteries Amaya

Find out more about Transposition of the Great Arteries here.