Special needs

Yes, my daughter is having risky elective surgery

"There are moments where I get angry, upset and resentful that we even had to make this decision in the first place. It doesn’t seem fair."

special-needs-medical-descision

Anchel and Syona at lunch.

This is probably the hardest thing I’ve ever had to write, because I’m about to publicly share the biggest decision I’ve ever had to make as a parent.

Early next year, my five-year-old daughter Syona will undergo an elective surgery called Selective Dorsal Rhizotomy (SDR). It’s a procedure that involves severing some of the sensory nerve fibres that come from the muscles and enter the spinal cord. The end result will hopefully eliminate spasticity, which is common in people living with cerebral palsy. Spasticity is a condition in which certain muscles are almost constantly in a state of contraction. The stiffness caused by this condition can hinder movement and speech.

The treatment my husband, Dilip, and I have opted for is not a popular one in Canada. In fact, the few centres that perform it do it differently than the ones in the U.S. These centres also don’t treat kids who, like Syona, are significantly impacted by their cerebral palsy. Therefore, after a great deal of research, long conversations and serious contemplation, we’ve decided to go to the leading surgeon in this field in the U.S.

It’s a major surgery. It carries a lot of risks and it’ll be painful for Syona. It requires a hospital stay and is a long-term commitment—physical therapy is required five days a week for the first year or two following the surgery. And, as you can imagine, it’s quite expensive. However, after meeting with the surgeon this past summer, we decided to move forward. It wasn’t a decision we made lightly and we chose a doctor whose specialty is this specific procedure. He’s performed it thousands of times.

So there are risks. But, like most things that come with big risks, the potential rewards are significant. As a result of this surgery, Syona might be able to stand better, move around in her walker more easily and experience reduced chronic pain and muscle spasms. It may also help keep her bones and joints healthy to prevent hip surgery down the road.

There are moments where I get angry, upset and resentful that we even had to make this decision in the first place. It doesn’t seem fair. While other families are busy deciding between signing their kids up for soccer or hockey, Dilip and I are meeting with tax experts and reading through scores of paperwork. I realize every family has their own set of unique challenges and issues close to their heart, but sometimes the weight of our challenges—compared to others—can hurt.

In those moments, I remind myself to be grateful: Grateful I didn’t have to make this decision alone. Grateful Syona is strong enough and healthy enough to make a good candidate for the surgery. Grateful we have family and friends who find ways to have our back. Grateful our workplaces have supported us throughout this whole process. Grateful for the little joys I would have taken for granted if my circumstances were different. We’re one of the lucky families—Syona, Dilip and I—and, while I may lose sight of that from time to time, I try not to ever take it for granted.

Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary five-year-old with cerebral palsy. Read all of Anchel’s Special-needs parenting posts and follow her on Twitter @AnchelK.

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