Sophie's story of CHD

“When I was pregnant with Sophie and it was time for my 20-week scan, we were so excited to find out if we were having a boy or a girl. The ultrasound started off the same as the others, but when they started to look at Sophie's heart, the lady went quiet, her brow creased, and the silence got more awkward.

Ultrasound of Sophie

I wanted to say ‘what's wrong with her heart?’ but I couldn't, the words didn't come out. We found out we were having a little girl and then came the conversation with the doctor, ‘You don't have long to decide what you want to do...’ of all the things said that day, these were the words that were replayed in my mind over and over again.

We walked in to find out the gender of our baby and walked out with the suggestion of terminating the pregnancy.

As we got in the car I realised we weren't given an ultrasound photo. I was trying to hold it together until we got home. I knew if I went back in I'd fall apart, so we went home without it. I called the next day and organised to pick it up. I looked at it and there she was, our little fighter posing with her fists up.

A couple of weeks later we were at the Heart Centre in Westmead Children's Hospital. Dr Cooper did an echocardiogram to confirm our unborn baby had Transposition of the Greater Arteries (TGA) and two holes in her heart (VSDs).

He explained she would need a balloon septostomy the day she was born and open-heart surgery before she was one week old. He said that they would do their best to close both holes in her heart.

Newborn baby Sophie

Sophie was born on February 17, 2016. She was transferred immediately to Westmead Children's Hospital and had her first procedure while I was being moved from recovery to a private room. I got to meet Sophie properly the next morning. I fell in love and bonded with this beautiful chubby baby. She looked completely healthy; it made it even harder to hand her over to the surgeons for open heart surgery... she looked okay. Just before she was wheeled away, we were told there was a chance she won’t survive, but we knew without the surgery she wouldn’t survive... She was six days old.

My husband Ben and I were given instructions for visiting Sophie after the surgery in the Paediatric Intensive Care Unit. Even stroking her head or touching her hand could wake her, cause her pain and bring on nausea. We were told to keep our visits short and just gently place our hand on her head and under her bottom, so she felt held and reassured but wouldn’t be stirred from the sedation.

Three days later Sophie was moved to a different ward. We were a step closer to taking our baby home and there was a fold-out bed next to her cot... I didn't have to say goodbye anymore.

But we began to realise her recovery was going to be more complicated than expected.

Sophie had constant violent hiccups and she couldn't make any noise, she was a baby without a cry. There was a rattle in her chest as she breathed. Her oxygen levels were lower than before she had the surgery.

The baby that breastfed effortlessly now struggled. She could latch on but would start gasping and choking straight away like the milk was going down the wrong way. Sophie was looking frail and skinny.

Despite all this, eight days post-surgery Sophie's medical team started preparations for her to be discharged from hospital. There was a steady stream of specialists as they ticked off her discharge checklist. It was during this time an echocardiogram was done at her bedside. The creased brow as the cardiologist hovered over the same spot on her heart, told us something was wrong.

And then they pointed it out ‘the vegetation’, a bacterial growth on her tricuspid heart valve so large it was flapping around on the screen in front of us!

It was decided that Sophie had endocarditis. Left untreated, endocarditis can damage or destroy the heart valves and can lead to life-threatening complications, so Sophie was prepped for surgery again the next day. Just a small procedure to install a PICC line into her chest for a six-week course of very strong antibiotics to be administered straight to her heart.

I was determined to get to the bottom of why my baby had no voice. At three weeks of age Sophie couldn't make a sound, she was still the baby with no cry and aspirating during most feeds.

Finally, a nasendoscopy was performed by an ear, nose and throat specialist who confirmed that Sophie's left and right vocal cords had been permanently paralysed due to nerve damage during her open-heart surgery.

Beautiful portrait of Sophie laughing, she has a heart surgery scar on her chest

Sophie was finally able to come home when she was nine weeks old. For her older sister Summer, it meant mummy was coming home too. We were beaming with joy.

When Sophie was six months old she finally started to make some noise... we finally heard our little girl giggle and she could say, mummy and daddy! Around this time we were also given a six-month gap between all her specialist appointments.

Unfortunately, as she has grown up, it’s become clear that like so many children with heart disorders, Sophie suffers from a whole range of developmental delays.

As well as seeing a speech therapist, Sophie also has occupational therapy, dietary, sensory and sleep therapy appointments. Then there are the cardiology check-ups, as well as visits to a neurologist. Sophie is also autistic which can make visits to the hospital very challenging as she associates it with traumatic episodes.

It makes life at home difficult and we’ve found it a real struggle to get the help we need from the NDIS. But for now, Sophie has a support worker at home and she’s in a support class at school which makes a huge difference.

Sophie prepared for surgery with her mum, Samantha

We’ve also finally got to the bottom of Sophie’s speech delays which was really exciting. It turned out there was a problem with her airways which can fold in and collapse. It’s very dangerous and can only be fixed by surgery.

After a bit of delay due to the COVID backlog, Sophie was finally operated on in September 2022. The doctors had to sedate her for a couple of days post the surgery which was testing as her heart rate and blood pressure kept dropping. But once they took the breathing tube out and woke her up, she was back eating and drinking very quickly and allowed home the day after which was amazing. She’s recovering really well, and her speech is much clearer – it sounds higher and is probably as it always should have been. We are so happy it went so smoothly and the hospital team were incredible.

We hope that after this round of surgery, Sophie won’t need any further operations till she is fully grown. Then it will be time for her heart valve to be replaced.

We cannot guarantee what the future holds but despite everything, she is doing so well and achieving so much. She’s started pre-school and she absolutely love riding now that she has a customised bike.

Life’s certainly busy, but Sophie is brave and strong and as a family, we are united to make her future as bright as possible."

- Samantha, Sophie's mum.

Sophie enjoying her customised bike in a pink helmet; Sophie in the water on a boogie board smiling
Acknowledgement of Country

The Victor Chang Cardiac Research Institute acknowledges Traditional Owners of Country throughout Australia and recognises the continuing connection to lands, waters and communities. We pay our respect to Aboriginal and Torres Strait Islander cultures; and to Elders past and present.

Victor Chang Cardiac Research Institute - The Home of Heart Research for 30 Years