Transposition of the Great Arteries: Nehaan’s Story

Nehaan’s heart defects, transposition of the great arteries (TGA) and ASD, were detected before he was born. His mum, Gunjan, shares their story:

I was a little anxious and nervous before our 20-week scan – given the importance of this particular scan. Our sonographer kept constantly talking to us as she was proceeding with the scan. When she reached the heart though, I could see from the look on her face that something wasn’t right.

She said she wasn’t getting all views properly and asked me to walk about a bit. She tried again after thirty minutes, and her face confirmed our worst fear. She went to get her colleague and they both confirmed that something was not right with the baby’s heart. This was Friday and we were asked to come back on Monday to meet a fetal consultant. We spent the longest two days of our lives in anxiety and still hoping and praying that the sonographers were wrong.

The fetal consultant then confirmed the diagnosis as TGA and referred us to a heart unit. My husband had read all about TGA before our appointment at GOSH so that we could ask relevant questions. I, on other hand, still hoped and prayed the sonographer and consultant were wrong.

The fetal cardiologist confirmed the diagnosis – that our baby had TGA. We were told that he may not necessarily have any other defect and he should potentially require only one surgery to fix the defect. We were told in detail about the diagnosis, the treatment plan, how I should continue caring for myself and thereby make sure the baby was healthy etc.

Our pregnancy journey changed from what had been a happy ride to one of anxiety and, at times, sadness. I started blaming myself as I am a type-2 diabetic. We started reading experiences on the Tiny Tickers website and also joined the Tiny Tickers Facebook group. Reading the stories and talking to other parents was extremely helpful. We learnt about complications, what to look for in upcoming scans and to have our questions ready for doctors.

At the 36-week scan, we were told the baby had developed an ASD (hole in the heart) as well, which could introduce some complications during the surgery. On the same day, I was diagnosed with high blood pressure and pre-eclampsia came into the picture. I was admitted immediately and was kept under observation for four days. The fetal cardiologist wanted to wait until the 38th week for delivery so the baby would be big enough to have surgery. I was admitted again in the 37th week for a day. As planned though, we were able to finally see our baby on the scheduled date via c-section.

As soon as I saw my baby, I was in tears and my first question was, “Is he blue? Is he blue?” He was a perfect little boy – and not blue. He didn’t quite need any emergency procedures. He was taken to NICU immediately and given prostin. He was also on a ventilator though, as he had trouble breathing. My husband was with him all this time.

It was heart-breaking beyond words when the team brought him to my ward so I could see him. His face was barely visible due to all the tubes. We still managed to get our first family picture though.

The following weeks were tough. Nehaan went through his TGA switch surgery and ASD closure when he was eight days old and was discharged after ten days. We had spent three weeks in hospital by this time.

Nehaan is now a happy five-month-old boy now. And I don’t know if I have been happier.

Find out more about Transposition of the Great Arteries and other heart defects here.