My son Charlie recently underwent hip reconstruction surgery. If you had asked me what I believed to be the hardest surgery Charlie would have, I would have said the tracheotomy while he was in the NICU. Or perhaps later, the tongue reconstruction, which involved cutting a pie-wedge slice out of his tongue and suturing the various muscles back together. But after this most recent hospital stay, my answer is clear: hip reconstruction has been the worst, but for different reasons than you would expect.
Cerebral palsy comes with various unknowns. By definition it involves injury to the brain, but what area of the brain and how extensive the damage determine what parts of the body are affected. This is often why doctors love the aphorism: “there’s no crystal ball.” There really is no way to know how your child will do.
For Charlie, because he had damage to all four quadrants of his brain, the way his CP shows up is through mobility and speech. He uses a wheelchair and a speaking device. They are game-changers, truly. He’s a champ with both. But cerebral palsy is a life-long diagnosis. It will reveal itself in different ways as he ages. The most recent development is a dislocation of his left hip because of how the pelvis formed due to lack of movement and low tone.
This dislocation could be “fixed” in one of two ways: a reconstruction of the pelvic bone or a resection of the socket which involves removing the bone altogether and joining the muscles at the hip. While the resection would leave him with a weaker leg, it would also remove the risk of dislocation and pain in the future.
Based on the damage to Charlie’s pelvic bone (imagine a sea cave, worn away by salt water) the doctor believed the reconstruction would be too complicated to be successful. After many long conversations, including one right before they wheeled Charlie away for the surgery, he agreed to look once he got in there and then call us to give us the odds on reconstruction versus resection. Nothing like waiting until the last possible second to make a call that could change your child’s quality of life forever.
When he called an hour later, my husband and I stood in the shadow of the hospital parking lot and cupped the phone in our hands. He said the reconstruction was possible. Did we want to do it? He also said, if it was his kid, he’d do the resection as it would eliminate a second possible surgery in the future.
Can I be honest? My gut told me to go with the resection. I did not want Charlie to go through that pain a second time. But a reconstruction meant full use of his leg again if it was successful.
With the tracheotomy, it was a sure bet: do this so he can breathe. With the tongue reduction it was the same: do this so he can breathe, eat, drink. But for the first time in Charlie’s life, we were presented with a choice with this hip surgery.
Ultimately, after an agonizing sixty seconds, which was all we had, we went with the reconstruction. Six weeks in a leg brace and then we’ll see if it was a success. And then we wait to see if it stays a success or if he dislocates it again in the next days, months, years. We don’t yet know if we made the right decision, but we used the knowledge we had to make the best decision we could. Now we have to let it go. That last bit is the hardest. How do you let it go?
The doctors are right: there is no crystal ball. But I think we need an addendum: “There is no crystal ball, so act with love and hope and grace, both for your loved one and yourself.
Jamie Sumner is a special needs mom and author.
Jamie-Sumner.com
Author of the middle-grade novels:
I feel caregiving may be a calling
for some but a falling out for others. Anyways it a blessing, do you feel me?