Duchenne Medical Trauma

by Jade Smith

about the author:

Jade Smith and her family received her son’s diagnosis of Duchenne in April 2021. They have since created the nonprofit Quade Journey Duchenne Muscular Dystrophy (QJDMD) to educate and support other DMD families in South Africa and around the world. You can find them on Facebook and Instagram.

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Part 1: Just an Ordinary Day

Our day started with errands and milkshakes, cleaning the hot tub for hydrotherapy, having a DMD melt down…and then…out of nowhere…TWITCHING. Quade started TWITCHING earlier this week, normal contractions. By this afternoon the ticks became so out of control.

As explained by his doctor, this could be because of high levels of calcium. or this could be the start of some neurological disorder. She ordered testing for Ionised calcium CRP / U&E Creatinine and FBC Platelets.

We are truly hoping that this is not serious and that it’s just a med adjustment…

Is there any way we will ever get used to this? Is there going to be a year where I’ll be able to say, “We are in the clear, Baboy, no more blood test”? Or will his screams in pathology continue to create nightmares as we sleep?

As Daddy carries him in, I know what’s coming. I fill in the paperwork and let the pathology nurse know that he is a difficult client. The moment we step in and he sees the familiar tubes and green arm tie, he starts sobbing “I don’t want to do this.” The words are on repeat. He changes to other sentences with the hopes that if he says the right thing, we will let him off the hook.

On the bed, I sit next to him and explain what is going to happen, but only seconds before – he finds strength in watching and explanations in trauma situations. He is sobbing as we try and keep him still. Dad on the one side, me on the other, and I count off the colours: “We are at Yellow, now we have Purple – we have two left – Yellow again, and then only the small Purple, then we are done.”

I guess it doesn’t get any easier and all he wanted was for someone to blame, so I casually say, “It’s okay, Baboy, blame me” and he suddenly calms. After the calmness settles in, I promise that I will never let them do a blood test if it’s not necessary – knowing that there will be more, a lot more, in the future.

And I wonder, will he get used to this? Will there be a point where it doesn’t completely destroy my soul and rip all that is left of me out of my body as I still hear his plea? Dad steps in and comes to his rescue and makes it a little better as Baboy complains…

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Part 2: Too Soon

This happened too soon, too soon after the pathology trauma on Tuesday – re-testing the same blood work after his meds adjustments. This time around, it was a little too fresh and raw. As we walk in, he knows what’s coming. The fear starts sooner than usual. He steps in and sees the tubes that have now become a part of his life.

This time with new sentences – “I can draw my own blood,” he says to the pathology nurse all the while screaming in terror when she comes close. We pick him up and swaddle him, arms and legs tied securely to keep his arm still. In itself this is difficult, so we restrain his feet from kicking, his body from fighting and his head from trying to help his body escape. His body is weak from the fight against the re-run. Dad picks him up and carries him out of the hospital like so many times before.

Why is this procedure so brutal, particularly because it has to be done? No parent or child has a choice in the matter. It’s all done and endured, all for another tomorrow.

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Part 3: This Journey

This journey is not for the faint hearted or the weak.

As most of you know Quade started with twitches last week. After numerous tests and re-testing, he was admitted to the hospital on Saturday morning.

His body was not absorbing the oral calcium as it should, so his paediatric neurologist decided to admit him and provide a calcium adjustment in an overnight stay through an IV. In the best of circumstances this is difficult for most parents… as you stand in the hallway with his screams running through your soul… as they collect more blood for more tests and insert the IV line.

In the process Quade also needed to go for Covid testing and was found POSITIVE – but asymptomatic. This put him and his biological mom in instant isolation. Although the one on one bonding time was good and much needed, the slow passing of time and an 8 year old just wanting to be a kid got to them both.

We are so happy that Quade could be home tonight and get some well-deserved rest after two long days, one IV and four blood tests in a row.

The bitter sweet moment comes when we stand back after all the trauma, watching him lay on the bed with all his siblings and him turning it into some sort of an adventure story for his sisters, full of smiles and laughter.

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Part 4: Once Again…

This time around re-doing blood work once again after a long hospital stay for yearly testing and I couldn’t bring myself to take photos.

Quade knew he was going to redo them but this time, he asked, “Could you just go and ask the doctor if I really have to do a blood test again?” As all of us do, we comply with the request. We trotted ourselves up to the doctor’s office and interrupted her to ask…if he really had to. When she said “Yes,” he immediately started sobbing in Daddy’s arms.

We went down to the lab and there it was, chaos all over again: pinning him down to get him still to get the blood work done. As I hold his arm down and push on his legs to keep him still because this is all that works, he yells, “Leave me, you freaking idiot!”

Those words shoot like daggers in the moment. There you are – trying your best to fight against this horrible diagnosis, fully hoping all roads lead to a cure… but the word lingers a moment – and once again the bad cop has crept into existence.

Is there a thing like DMD Mom Trauma? I think I am living it.

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