An ultrasound is usually a magical moment for parents as they lay their eyes on their tiny baby for the first time. But for some parents it can be the worst moment of their life.

“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. It seemed like that was the only reason we were there! The ultrasound started off the same as the others, the lady chatted happily to us and pointed out what she was looking at as we went.

As she started to look at Sophie’s heart she went quiet, her brow creased, the silence got more awkward. She’d move on to Sophie’s tummy, legs and feet and kept coming back to her heart stealing another look and saying nothing. I wanted to say ‘what’s wrong with her heart?’ but I couldn’t, the words didn’t come out.

Termination was even discussed

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.

The diagnosis and birth

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.

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 wasn’t the frail, blue coloured baby we had prepared ourselves for. 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.

The heartbreak

My husband Ben and I were given instructions for visiting Sophie after the surgery in the Paediatric Intensive Care Unit. Her medical team were trying to keep her as relaxed as possible with heavy pain killers and sedation so she could begin to heal. 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.

As Sophie started to wake from her sedation and the process of weaning her from the painkillers began, we started 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. With every breath her throat and diaphragm were sucking in like she was having an attack of croup. 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. All the fasting before and after the surgery plus the endless diuretics had caught up with Sophie and our chubby baby was looking frail and skinny.

Complications

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. It was to be the final test to clear her to come home, except it wasn’t. The creased brow as the cardiologist hovered over the same spot on her heart, told us something was wrong. Backup was called for opinions and there was confusion as they discussed it… ‘But she hasn’t had a temperature, it doesn’t make sense.’

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.

One of the challenges of having a baby with a complex medical problem is that you need to be their advocate. You represent them and need to communicate for them. It’s a lot of pressure, to balance the fight for what’s best for your baby and maintain a good relationship with their medical team.

Our voiceless baby

We were locked in to another six weeks in hospital and 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, two days before the Easter long weekend a nasoendoscopy 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.

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.

Now that Sophie has turned one, we’re approaching her next round of appointments. Whilst we sense the need from others for reassurance that Sophie is fine now, that it’s all behind us, if we’re honest it’s just not the case.

As Sophie’s parents there are reminders every day that her mended heart is not completely fixed. We cannot guarantee what the future holds but we know that Sophie is brave and strong. She is doing so well considering everything she’s been through.”

Little Sophie is now two-years-old.

Sam shared that the night before Sophie’s first birthday was very difficult for her.

I think it is very common for families of children approaching that first anniversary.

Sam wanted to celebrate and give Sophie the birthday she deserved. After everything she’d been through she was now turning one and thriving and there was so much to be happy and grateful for.

“In reality as the hours got closer to anniversary of her birth the realisation hit me that it’s not always easy to celebrate the anniversary of the most traumatic time of your life.”

“I stayed up all night and felt completely trapped as I relived every single moment. Every moment. Every single ultrasound, the birth, her entire hospital stay and every appointment after.”

“I realised I needed to find a way to work through the fears, emotions & trauma of the last year and a half or it would own me. So I started to write it all down.

“I haven’t experienced another night like the one before Sophie’s first birthday and I know putting pen to paper is the reason why.

Writing this helped me immensely and I hope sharing it helps others even more.”

Sam recently shared Sophie’s story to help raise awareness for Heartkids and it made me realise how lucky I was as a parent to not know of our sons heart condition before he was born. You can read my story here.

Read more – Why I am Glad I Didn’t Know About My Sons Illness Before Birth

Congenital heart disease is the greatest killer of Australian children under one and every day in Australia eight babies are born with a heart defect.

You can find more info and support at Heartkids HERE.

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