Patient Story:

Milla's tetralogy of fallot

As told to us by Milla's Mum, Natasha, in early 2014.

We live in Tamworth and Milla is my third child (of four now). My pregnancy was completely normal and nothing showed up on the ultrasounds along the way, so I thought that I was all set to have her pop into the world like her older brother and sister. I was right, to the extent that she arrived as expected, but she was born with darker skin than the other two and wouldn’t breastfeed. The nurses expected her to pink up, but eight hours after she was born things just didn’t feel right so I called the midwife at 10pm. She said Milla was a bit ‘dusky’ (blue) and took her to the nursery for a while, but five hours after that they came in to tell me that they wanted to transfer her to The Children’s Hospital at Westmead. A few hours later, at 7am, Childflight flew her down and I followed in the car with my Mum and sister.

At CHW Milla was diagnosed with Tetralogy of Fallot and it was six weeks before she had her first operation (a shunt), then a repair operation at eight months old. It was a particularly scary time, especially when Milla’s heart stopped twice after the operation, but she pulled through.

We were told that Milla would be developmentally delayed and they were right. She goes to a special needs school and for many years we communicated through sign language, although she’s learning more and more words now. Milla is an incredibly happy child. She wakes up every single morning with a big smile on her face. If only we could all wake up as happy as Milla does! She absolutely loves life and adores her siblings, spending as much time as she can with them.

When in late 2013, at eight years old, Milla became more and more tired and withdrawn, and wasn’t waking up with a smile on her face, we knew that something was up. She was admitted to Tamworth Hospital in October and in November diagnosed with heart failure. All of her vital organs were enlarged and going into failure. She was in big trouble.

In early December she went in for another surgery and had to be ventilated and put on muscle relaxants in ICU for the next four weeks, during which time she lost a lot of weight. She slept through Christmas Day, but Santa visited anyway. Since then she has been getting one present each and every day to make up for it, until she opens them all.

It is the cruellest form of torture having a sick child, and all I wanted was to take Milla home. For the first three days of Milla being in ICU I was pale and shaky with anxiety and from not eating, or drinking enough water. I soon realised that I would be no use to Milla like that, so I forced myself to go to sleep in the Parents’ Hostel every night, knowing that the ICU staff would call me if anything changed. I made sure I ate properly and drank water constantly, and I’m so glad I did because when Milla came out of ICU I was refreshed and had the energy to look after her properly.

Christmas Day was tough. I’d decided that I didn’t want the other kids to see Milla in ICU so we weren’t together on the day. We have video calls but it’s not quite the same. It felt like any other day, really, without my family around me, because that’s what really matters for Christmas. It was on Christmas Day that the doctors tried a new drug, too, which was either going to make Milla much worse or much better. It had its risks but we needed to do something, and it paid off. Since then, Milla has improved every day.

On the 3rd of January she was extubated and on the 6th she was already eating and walking. I think we’re over the worst of it now, and we’re just concentrating on getting ourselves home.

Milla will never run a marathon, I know, but she can swing on a swing, she can play with her siblings, she can go back to school… All I want for her is that quality of life.

I used to think ‘why me?’ but bad things can happen to good people, so ‘why not me?’. Every journey is different and you have to just learn to take small steps, ride out the highs and the lows, and appreciate the good that comes of every bad. I realise more than ever how important my family is to me. My Mum and Dad, Milla’s Mar-Mar and Pop, stayed the whole time for example. They have been absolutely amazing. And people from all over have been so kind. There are no words for how much I appreciate what everyone has done for us. Things like taking a lasagne over to my husband and kids one day, or the school organising a food hamper, neighbours offering to have the kids over for playdates… All the practical help has really made a difference.

Lastly, I think that for anyone going through something like this, there will be dark days where you don’t know how you (or your child) will survive. Just believe that one day will be your day. We went through some really tough times and sometimes I wondered if we would ever make it out of ICU, but our day came and look at us now – we’re in the Fairy Room on Edgar Stephen Ward (which Milla loves, being surrounded by girly things) and we’re counting down the days until we go home. We made it, we’re lucky. And I will appreciate a newfound perspective on life after going through this. It’s certainly life changing.