Surgery: the hardest decision I’ve ever had to make

By Tara Thompson

People often say they find it hard to make decisions. Some put it off, while some ask for advice, there are those that go with their gut feeling or there are the people that simply just know what to do. I feel like I fit into all of these categories depending on the decision being made.

It’s funny looking back and thinking about the types of decisions I had to make depending on what stage of life I was at.

You have your high school years; ‘What should I wear to the party on the weekend’? Which lets face it at the time was a very important decision.

Then there are the bigger ones ‘What will I study’? ‘What do I want to be when I grow up’?

Moving on to after school life. ‘Should we buy that house’?, ‘When will we get married’?  ‘When is the right time to start trying for children’?

Then the kids come… ‘Will I breastfeed or bottle-feed’? ‘Should I wake them from their nap so they go to bed on time’? and the important ‘What will the theme be for their first birthday decorations’? (Or perhaps the importance of this decision is just me?).

Decisions are an inevitable part of life. But all of the above don’t feel crucial, critical or life changing to me based on where we are now.

Over the past 3.5 years my life has changed in many ways, including the types of decisions I am now faced with. My husband and I are always hit with complicating and heartfelt decisions that we need to make for our daughter. You see once you’re a special needs parent so much changes and decision making is a big aspect of that. We are now faced with things like; ‘Do we squeeze occupational therapy in on the same day as physio’? ‘Should she wear SMOs or AFOs’? ‘Do we apply for a standing frame or use all of her funding money to try to get the specialised bike she needs’? ‘Do we get botox, and how often’? ‘Is this medication affecting her behaviour? If we trial something else will she have another seizure?’

The list is just never ending!

These decisions are important. They affect the quality of life of a little girl; our daughter. They are overwhelming to think about at times and stressful. They are important and we are faced with these types of decisions frequently and sometimes on a daily basis.

But one of the biggest decisions we have ever had to face is; ‘should we put our daughter through a selective and invasive operation in the hope that it will improve her wellbeing?’

This operation is called SDR surgery (selective dorsal rhizotomy). A spinal operation where spasticity is removed from the body with the aim of giving patients the ability to move more freely without pain and stiffness and often giving them a better opportunity to walk independently.

The decision to apply for this operation has not been an easy one, in fact it has taken over two years to decide if this was right for our daughter.

It has been two years of researching, of following other stories, of speaking to specialists, therapists and to other families. Two years of it being a conversation within our house, tracking down videos of other children who have had it and two years of deciding yes, then deciding no, yes, then no again, over and over again. This process was consuming.

We also had the decision of ‘do we just wait till she is 6 and see if our doctors here in Australia would do it’, knowing very well that the chances were slim or the alternative ‘do we apply overseas to a doctor that specialises in SDR surgery and see if we can fundraise $100,000 to get her there.

Even if we weren’t going through a stage where we were actively discussing it, the operation was always something in the back of my mind, a thought that would just never go away. I knew we just had to apply and go from there. As soon as we did apply, that’s when we knew. Although we were slightly scared for a yes, the thought of her being turned down as being a good candidate was 10 times scarier and once we got that letter all of our doubts were gone. The specialists thought she was an excellent candidate that would have better posture, be more comfortable, have more ease in all movements, overall wellbeing would be improved and it was predicted she would be able to walk independently in all environments.

This by far was the biggest decision we have had to make and will probably ever have to make. While we went through many thought processes to get there, sometimes you just need time and eventually it all just seems to come together.