A Child with TGA

I am one of many unknown parents whose child suffers from a congenital heart defect (CHD). There are many silent parents around us who have had to go through and are still going through this emotional experience.

In a way, I was lucky and I was told my unborn child had TGA after many scans to confirm at 24 weeks pregnant. Some parents are left unknowing until the birth as this may not always be detected. We were able to prepare ourselves, although nothing fully prepares you for what you are about to go through.

From the beginning, I had a smooth sailing pregnancy, with only the occasional occurrence of morning sickness and the dreaded pelvic pain but everything felt normal. The scans were going well. We celebrated having a gender reveal meal having a canon to reveal what we were having—it was a girl!! We were over the moon. That was until my 20 week scan where they told me she was being awkward and they were unable to get the correct pictures of her heart. Another appointment was made and we had no idea the news we were going to get. At the next appointment, we were told something didn’t look right. We spent our weekend worrying, waiting for the next appointment, this time with a heart consultant. He then told us he suspected our baby girl to have TGA, transposition of the great arteries.

TGA is a heart condition that means the two main arteries that flow blood around the body and back and to the lungs, were the wrong way around. This meant when our baby was born the oxygen wouldn’t be going around her body, helping her breathe. It would be going to the lungs and back to the heart. There was no oxygen flow.

We were scheduled another appointment, this time at a further hospital with a heart specialist that would confirm whether or not our baby girl would need open heart surgery when she was born. She did. He confirmed the worst possible news any new mother would want to hear.

After talking to the heart specialist and midwives, we created a plan of what was going to happen when she was born. We prepared for the worst.

I was induced and our little girl made an appearance shortly after, looking extremely blue and oxygen deprived. I held her for five seconds and then she was taken. She was taken to the neonatal unit where she was put on oxygen and had doctors around her monitoring her, trying to stabilise her. Four hours after giving birth, my partner was woken up to be told he needed to come down to see her as it wasn’t looking good. I was unable to go straight away so I was left in the unknown, not knowing what was happening. When I managed to get there in a wheelchair, she was stabilised. I finally saw her for the second time, but it wasn’t how any parent imagines seeing their baby. There were more wires than I’d seen and she looked lifeless hooked up to the oxygen, but she was showing more colour and that was when I knew she was going to be ok. The oxygen was supporting her and she was going to fight to get through this.

In the morning, we were taken to the children’s hospital where at 1-day-old, she had a balloon septostomy to help the oxygen flow around her body as she waited for her open heart surgery. For the next six days, we stayed by her side as she progressed well and we were able to hold her and was taken off intensive care and onto a ward. On day 6, she went for her open heart surgery.

I was able to hold her in my arms and walk her to the operating theatre and place her on the bed. The hardest part for us was giving her a kiss goodbye as she was screaming, as if she knew what was going to happen. I couldn’t stop her crying, then she was sedated. We left and had a long six hours without her as we waited to hear the news and get to see her again.

When we finally got the call, we went straight to intensive care to see her. When we arrived, loads of doctors were stood around her, setting up her wires and medication. She was still sedated. As I leaned forward to see her, she looked different. She was swollen. I took the blanket off her to reveal the plaster going down her chest. They had closed the wound which I immediately knew was a good sign and the surgery had gone well. For the next few days, we waited for her to wake up and begin her healing process. She was a true fighter. She then suffered three seizures and a slight bleed to the brain but she overcame every obstacle put in her way and recovered extremely well. On day 17, we were finally allowed to come home, after being told to prepare for a long six weeks in hospital. We were truly amazed at how quickly she had recovered. In the process of her recovery, there were many things that happened which completely broke us. We were emotionally battered and drained but we all overcome things we never thought we would. There is so much more to this story that I will always remember and will always be a part of my beautiful girl's journey. To any other TGA parents, well done. And for those to come, there is always a light at the end of the tunnel. Try not to worry although this is extremely hard not to do. But it will be ok.