Tuesday, January 24, 2012

What if it's not cerebral palsy?

Malachi on his new scooter, which helps him "crawl" around,
while Jaden helps retrieve their "toys" from inside a kitchen cabinet. 


I've thought for a while now about how it would probably be a lot easier to accept Malachi's disability if it were something genetic, like Down syndrome.

Don't get me wrong, I don't think it would be easy, just a little easier.

Because at that point, it would just be who he is. It would be part of the whole package, down to his very DNA.

But with a brain injury, something happened to Malachi, something that took something from him. Along with that are all these feelings of loss and guilt and grief that I'm not sure I'll ever fully escape.

I've sort of alluded to this idea before that injured special needs kids aren't the same as genetic special needs kids, and I've thought of writing a more in-depth post about it for a while, but I always came back to "what's the point?" Why do I want to point out this potential rift in the special needs community? Do I really want to get into some sort of horrific "who has suffered more" debate?

No, I don't.

So why am I bringing this up now?

Well, because almost two months ago we took Malachi to a new developmental pediatrician. Our regular hospital hadn't sent over Malachi's records, so all she had to go on was what I told her and what she saw. With that disclaimer, she mentioned casually — as if this wouldn't explode my head — that she wondered if Malachi's prematurity wasn't the cause of his poor motor control. She said his expression of cerebral palsy is unusual for someone with his type of brain injury (Grade III PVL) and that it might be a genetic or metabolic disorder instead but that no one looked for it because of the results of the ultrasound.

Say WHAAAAAAAAT?

I quickly dismissed this idea. It's nuts. And besides, wouldn't Jaden, who has identical DNA, have it, too? Clearly she just didn't have all the facts.

Right?

But she had planted a seed and at the edge of my consciousness questions sprouted up.

She had asked if he was unable to do things he had previously been able to do. No, I had responded, it's been a steady (albeit exceedingly slow) progression.

But is that really true? Malachi was a champion eater as a preemie newborn but now struggles with a swallowing disorder (dysphagia). And remember last spring when he learned how to roll over? Yeah, he still does that only every once in a while and often seems to forget that it is an option for him. How about in early December when he could stand by himself holding onto the crib edge? Yeah, I've tried that a few different times over the last few days and no dice.

Why does it seem like he can't build on his skills like Jaden can? Is it just the type and severity of CP that he has or...

...is something else going on? (Dun, dun dun.)

What if!, my mind exclaims. What if it's like those twins who were misdiagnosed with cerebral palsy but actually had a metabolic disorder? What if that's Malachi? What if he just has to take a pill and he'll be all better?

I think about this scenario in exactly the same way I think about what I would do if I won the Powerball tomorrow. Yippeeeeee! So long, suckers!

Yes, I've grown a lot since Malachi's diagnosis. Yes, I know some of you out there have cerebral palsy yourself and wouldn't change it and don't want me to diminish your existence.

I get it. I really do.

But, c'mon, man! What if? What if I could leave this Land of Not OK? What if I could go back to only being a visitor? How sweet that would be! What if it's not cerebral palsy?!

Then another voice calls from the depths of a very dark place.

What iffffff, this voice slithers. What if it's not cerebral palsy? What if it's like that other boy you know? The one who was misdiagnosed with cerebral palsy, but at age 7 his parents found out he actually has a rare genetic disorder?

A genetic disorder that will result in his slow degeneration and death by his mid-20s.

No!

Leave me to my cerebral palsy! I'll take this diagnosis! It's fine! It's great, actually! I love it!

So, it's like I said. I really don't want to get into a debate on the hierarchy of special needs and who has it "better" or "worse" than someone else.

But what if.....?


Stumbo Family Story This post is part of the CP Connection, a monthly blog party for all cerebral palsy-related blogs! Click the above graphic to read more or participate in this blog party!

22 comments:

  1. Have you heard of Epigentics? I don't know much about it just read it in a book somewhere. Its about what genes are "turned on" They think it is why it explains why identical twins can be different. That the environment can shape our genes. If it is genetic it could explain why one twin has it and the other doesn't......just saying

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  2. Shasta, I have been there too. In fact when that special was on Dateline about the misdiagnosed twins, I had several phone calls from well meaning people saying that maybe that was our case. Not so. BUT...like you said, I am ok with that if it meant something more serious and degenerative could be wrong. They looked at the possibility of a metabolic disorder at OHSU for us and they told us "luckily that is not the case". At the time, I didn't think it was "lucky" to get a cp diagnosis. But when they explained to me some of the metabolic disorders - I was ok with ours.
    P.S. I love the scooter!!! I need one of those. Oh how I wish we had a good EI person over here...

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  3. Wow girl! I don't know how you manage to sleep at night with all that to think about!

    I hear ya on the whole difference between genetics and injury. I've always wondered the same thing...is the "grieving" process different when it's genetic? I'd love to hear opinions from other moms on this one!

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  4. I have a feeling that the grief ends up being the same, but from different directions. Just like how some people try to claim a stillbirth is not as bad a loss as a loss shortly after birth ("You never got to meet her!"), and a loss shortly after birth isn't as bad as a loss when the child is older ("You never really got to know her!"). People who pass on a genetic disability, I'd guess, have feelings of "*I* caused this, *my* DNA passed this on to my child." I know that is how my hubby would've felt, which is why he got tested before trying to conceive for Tay Sachs (he's Jewish) and we both got tested for cystic fibrosis (his sister is a carrier, turns out he is too, so we double checked for me).

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  5. I found that once Ashlea got older her diagnoses 'solidified' and the crazy theories stopped flying around. Often it takes a paed who has known your child from the very beginning to really get it - of course Ashlea's disabilities are caused by what she's been through. We had another doctor try and go down the metabollic path too....was a waste of time and energy.

    It's probably not much consolation now but the picture WILL become clearer over the next couple of years.

    PS Going to put you on my blogroll - just haven't got around to it yet...

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  6. Wow! I don't know how I feel. Would it have been better if it was a genetic disorder? Would I feel less guilty? I don't know. It seems so hard either way. No matter what...my son having some kind of problem...no matter what it is...is terrible. I would rather be the one hurt...as I'm sure every parent feels. This is thought provoking.

    Knowing about brain plasticity, I think I choose brain injury. Genetic disease seems, though I'm no expert, something that doesn't necessarily improve. The gene is broken, mutated, etc. You can't fix that. You just have to work around it.

    But the brain fixes itself to some extent. Malachi is still young. What he has learned is not lost. It's still there, while he works on something different. The brain may need more energy for cognitive development, fine motor skills, or other things...this energy then is taken away from gross motor skills. So gross motor skills rests, while the brain focuses on the other stuff. But eventually, it will come back around. Then at some point, all the connections will happen, and he can suddenly do all of them together.

    That is not a certainty, but it's a possibility. So...I'd rather have the possibility of things improving, rather than, merely trying to compensate for DNA that can't be altered...yet.

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  7. I agree with Amy, you'd still grieve deeply, just from a different direction. Some of what is the "rub" with CP is the "what if" factor.

    Since it is an injury, could it have (maybe) been prevented (like that big cut you got from using a knife without a cutting board). What would the child be like? And we grieve again that our child won't be the star of the track team.

    And since the peculiar behavior is from a brain injury, and not always obvious from the outside (unlike Downs or an amputated foot), people can be harsher in their treatment of the child. He SHOULD be able to do this, he has two hands and two feet! In that regard, leg braces and/or a wheel chair help because they point out to others that there is something different about your kid and he could use a little help and compassion.

    Not pity, just compassion. Pity can actually put the child in a very bad place - the Pity Party Pit. It's a hard place to get out of once you start down that slope. And we don't want our kids developing this as part of their character.

    Keep up the good work, Shasta!

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  8. I can totally see where you are at. In my opinion I see it as this. What matters the most, the kids right! End of story it doesn't matter who suffers more. Getting into a debate is only going to take away from the focus of trying to help these kids. I thought you'd like to know I added your site to my blog roll!

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    1. Thanks very much Ross! I'll add you, too.

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  9. I just stumbled across your blog and I wanted to tell you I loved this post. I love posts that really make me stop and think. My 2 yr old son has Ds and you wrote of things in here I have never thought of before and I like that.
    And just so you know, I would LOVE to read an in depth post on what you were talking about...Genetic vs the injury special needs kids. It would just be interesting to hear different points of view. I love blogs like this where people discuss things openly.

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    1. Hello and welcome!

      Thanks for your encouragement; it's good to hear from the folks I worry about offending! :) I'll think more on it and see if I come up with something.

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  10. I will say this plainly. I LOVE Down syndrome. I see Nichole as perfect, complete, exactly how she is supposed to be. Nina and her cerebral palsy. NOT so much. I fight Cerebral palsy, it knocks me down as easy at it knocks Nina down. I would never take Down syndrome away from Nichole but would take Nina's CP away in a nanosecond if I could. And the grieving has been different. With Nichole, I can move on, with Nina, sometimes that grieve lingers (because you know grieving is not a one time thing)

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    1. Thanks for your forthrightness and honesty! It's interesting to hear from someone who works with both.

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  11. Wow. You did an amazing job thinking and writing this through. I have had the same feelings and thoughts. My son has CP (there is no question about the diagnosis) - but I often wonder if it would be a good thing if he were "cured." He is so wonderful and amazing and INSPIRATIONAL just the way that he is. Our lives have been blessed in so many ways because of his CP - but at the core, we don't want our babies to suffer. Great post. Oh and I see where Ross added you to his blogroll so I was about to as well - but I've already done it!

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    1. Yup, you're on mine, too!

      Thanks for your compliment. I think it's true that the older our kids get the more we actually like CP and I've heard from several adults who say they wouldn't "cure" themselves if they could. It's hard for me to imagine that right now with the pain so fresh, but I believe them and it gives me hope.

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  12. The what if factor is the worst for me. I play it all the time. What if I went to the hospital sooner? What if the nurses weren't on shift change and I didn't wait 10 minutes for a room? What if, what if....
    I try not to go there too often, though in the beginning I went there all the time. I think if CP was genetic it would knock down my guilt by maybe 50%. Until I read your post, I never really thoguht about it that way. Hmmmm.......

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    1. Oohhhh yes. Played the what if game for months and have since shoved it down to a dark place. I don't even think about anything related to their birth or NICU stay anymore.

      One day I'll have to probe that dark place, but not today.

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  13. Funny (in a non ha-ha way), but a friend (daughter doesn't have CP) just found out her daughter may have a mitochondrial disease, that it may have been the cause of her older daughter's autism (there's a link), may have hastened the death of her daughter's identical sister at 2-days-old and - the kicker - that it's inherited through the mother. She's beside herself with the fact that *she* may be the reason this happened to her daughters, even though there wasn't a dang thing she could've done about it.

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    1. Yeah. I can understand the guilt, but maybe I'm being narrow-minded when I say I just cannot imagine it approaches the levels of mothers of children with brain injuries.

      Personally, I spent 10 solid weeks attempting to keep my babies inside for as long as possible. I fought with nurses and doctors to get what I thought was the best care. I did everything I could, but there are countless decisions I made or didn't make that could have resulted in a different outcome. The long and short of it is that I failed.

      Forgive me for being crass, but the only "decision" your friend made was to have sex during that particular conception cycle. It's just not the same thing.

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  14. I clicked through the CP connection and I just have to say that I am sitting here stunned that you said EXACTLY WHAT I THINK ALL THE TIME. So thank you. I know that grief and that loss and that "something HAPPENED" feeling so well. And I too have sometimes traveled the "what if it's not CP" road (we have no idea why my daughter has CP and nobody can tell us) but I declined genetic testing for the time being (maybe in the future). I just seriously could have written so much of this post. Thank you for saying what was in my head.

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  15. Did you know that there are genetic disorder related to processing enzimes, that can be treated with a diet and supplements, and that would take away the symptoms? (for example Arginase deficiency, Glutaric aciduria type I, etc). If you suspect that it can be a genetic disorder, why would you close your eyes and not research on that? it doesnt matter that his twin brother has no problems, the genetic is not like that!!!! ask a genetician if you don´t believe me. A lot of genetic disorder can be treated! now there is a research that shows that even down syndrome can be treat with lithium to improve cognitive function. Is not in your hand to decide wether he has a brain injurie or a genetic disorder. you have to search for the truth of the matter and act on that. Is more confortable been in this position, but "what if" your son genetic´s disease was treatable, and you haven´t treat him because of this misconceptions? I´m sorry if i sounded rude, I just want to help. In this kind of matter, I only think in my son welfare and not in how I feel, with the guilty or grief etc (my son was a premature baby, born at 28 weeks, PVL sings in MRI, but doesnt fit in any type of CP so he will be tested for metabolics disorders in this days).Sorry for my english, best wishes.

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    1. Indeed. Good points. He has damage shown on the MRI in exactly the areas that his motor difficulties correlate to. I'm about researched-out right now, but I shouldn't close my eyes to any possibilities. If only our doctors would respond to their e-mails in timely fashions.... sigh...

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