Malia’s heart condition, transposition of the great arteries (TGA), was detected by a sonographer before she was born. Her mum, Jo, shares their story:
At my 20-week scan, the first thing I was told was that we were having a little girl. I remember crying silent tears of joy as the sonographer continued the scan.
I was deciding how to tell my partner that we had a daughter on the way when the sonographer paused. “I’m looking at the heart,” she said, “But I can’t see a shape I’m looking for.”
I stopped breathing.
“I don’t know if it’s because I just can’t see it, or if it’s not there. If it’s not there, I’m not sure of the significance. You might have to go to Bristol for another scan”.
A few moments later, I was ushered into a side room and a nurse came in with leaflets and tissues. I asked if I needed to call my partner. She nodded. A cardiologist from Bristol called us an hour later and we drove from Plymouth to stay the night, so we could get to our early appointment in time.
Once again, I lay there whilst my belly was scanned. Quiet muttering between the consultant and the sonographer. Words I couldn’t quite hear or understand. Our daughters heart magnified on the screen in front of us. Blue and red flashing.
Another side room. A model of a heart on the table. A book. I opened it and then quickly closed it.
“What is it?” My partner asked.
“A scary book,” I replied, “We won’t need to look at that.”
I sat reeling from the images of little babies with tubes up their noses and scars down their chests when the consultant came in.
“There is a heart problem,” she said. “But we can fix it. The outcome should be good”.
She drew a picture for us and explained how our daughter had TGA (transposition of the great arteries). “If you decide to continue with this pregnancy, you will need to be induced at Bristol. She will most likely need key hole surgery immediately after birth and open heart surgery in the first two weeks of life”.
We were given information about the hospital, the heart defect and a booklet from Tiny Tickers to take away with us. The car journey back home was a quiet one. Lots of tears. Deep thoughts. What would her life be like? How would we cope financially living in Bristol? What would her recovery be like? Would she make it? The words of the consultant echoed in my head: “There is nothing you have done to cause this and nothing you could have done to prevent it”.
Finding out that your child has a heart defect is devastating, but not finding out… that would be another story entirely. We owe our daughter’s life to the sonographer who detected it. We had time to get our heads around what was going to happen and we were able to make a plan and prepare. A gift that not all families receive.
Our baby girl, Malia Autumn Rose, was born on 9th September 2022. She had her switch on the 19th September and was discharged on the 30th. All of her follow ups have been really good and she has already come off of some medication.
Tiny Tickers provided support and information which helped us navigate through an extremely challenging and painful time. Reading stories by other families helped me to feel that I was not alone. Hearing about children with Malia’s condition who had successful surgeries gave me hope. If our story can help another family through this time or raise awareness about congenital heart defects then I would like to share it.
Jo and Malia are supporting Tiny Tickers Heart Week by walking 117 miles – the distance from their home to the hospital where Malia was born and treated. Find out more and support them here.