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The Boy in the Bubble
I'm half-heartedly watching an episode of "American Experience" on PBS about The Boy in the Bubble. It's a fascinating subject, I just can't bear to watch that much television. So I'm half listening and half doing other things, like updating my resume.
I have such mixed feelings about some of the "heroic" measures that some doctors take with special needs kids. I'm sure I could feel differently if I were in that situation, but for now, it just makes me nervous. I mean, this kid was trapped in this plastic playroom because doctors promised his parents a cure for his immunodeficiency and then couldn't do it.
I see the same thing with some of the micro-preemies that are in my program. One of my clients is a former 21-weeker and it is just amazing and staggering to think about all of the interventions that were performed to keep her alive. And then who knows what the long-term effects are going to be? She's 6 months old now and looks/acts like a 3 month old, so it's hard to tell. There are soooo many things that can go wrong with micro-preemies.
Some countries won't even attempt to intervene on babies born before a certain time, like 24 or 26 or 28 weeks. As a clinician I can see the reasoning, but as a parent? What if we get pregnant and have a micro-preemie? Will I be singing the same tune?
Sometimes I think too much.
I have such mixed feelings about some of the "heroic" measures that some doctors take with special needs kids. I'm sure I could feel differently if I were in that situation, but for now, it just makes me nervous. I mean, this kid was trapped in this plastic playroom because doctors promised his parents a cure for his immunodeficiency and then couldn't do it.
I see the same thing with some of the micro-preemies that are in my program. One of my clients is a former 21-weeker and it is just amazing and staggering to think about all of the interventions that were performed to keep her alive. And then who knows what the long-term effects are going to be? She's 6 months old now and looks/acts like a 3 month old, so it's hard to tell. There are soooo many things that can go wrong with micro-preemies.
Some countries won't even attempt to intervene on babies born before a certain time, like 24 or 26 or 28 weeks. As a clinician I can see the reasoning, but as a parent? What if we get pregnant and have a micro-preemie? Will I be singing the same tune?
Sometimes I think too much.
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I work in Early Intervention. Early Intervention is a service that provides home- and community-based therapies and services for children under 3 who have or are at risk of developmental delays (due to diagnosis, risk factors, etc.) and their families. EI is a multidisciplinary program, which means that the therapists come from all different educational backgrounds. I happen to be a social worker. (http://www.mass.gov/dph/fch/ei.htm)
Before working in EI, I was a child welfare caseworker, and before that, I worked in a homeless shelter.
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I'm also a huge advocate of early intervention! I can think of so many of my former students and their families that would have benefitted from EI. The research with EI and autism is astounding. The sooner you reach them the better.
How long have you worked in EI? I know it's a burnout job. I worked as as SPED teacher for 5 years before taking my current position as an instructional support person for new teachers.
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That's awesome that you went from SPED to teacher training. My SIL was a middle school teacher for a long time and know she's in teacher training in Missouri. Good for you!
And I /love/ bleeding hearts!
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I think you and I should open up some kind of foundation! Should I call Bill Gates for some cash?
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And yeah, I'm pretty sure she's the earliest in our program. (I win!!) I used to have a former 24weeker and this girl wins.
She's doing remarkably well, I have to say. I'm pleasantly surprised.
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And I totally agree that rationally I'm not sure heroic measures are always a good idea, but I'm not sure I would feel that way if it was MY kid who needed a lot of intervention.
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Exactly. On a logical level I am hesitant to perform such heroic measures. But my kid? I think it would be hard to say, "Don't try," when there's obviously a /chance/.
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As for the client, she was born 4.5 months early. Given that she's at 3 months developmentally, when she would only be 1.5 months old if born on time, I don't think she's doing too badly. I think from your replies to comments, it's clear that you think she's doing well, also, though I couldn't tell for sure from the post.
Also, this reminds me of the one micro-premmie we had at the hospital in Cleveland when I was working in medical records. I was taking some of her lab results up to the NICU to add to her chart, and her father was there with her. A professional-looking gentleman, with a gown over his business suit, and he seemed so sad, yet so hopeful, while he was gently touching her. And she was so tiny, even though she was about 2 months at that point. She may have been something like a 25-weeker, but I don't remember exactly. She was in much better shape than some of the other NICU babies, though. Especially some of the babies that were going through withdrawl. NICU was one of the most heart-wrenching things I've ever seen.
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And I've probably done the math of her current age wrong, because she's definitely older than a gestational age of 1.5. When we did her assessment, which was probably 2 months ago, she was testing at 2-3 months and that was right around her GA. So she's older now. But yes, right now she's on target with her adjusted age... but it's still early to tell about long-term effects. She was very lucky in terms of not having brain bleeds or any major early signs of cerebral palsy. I'm pretty sure the retinopathy she has is resolving as well and she isn't showing hearing concerns yet. She's INCREDIBLY lucky.
But she's in the serious minority. And I'm VERY curious to see how she progresses... but I'd really like to see who she is at 7 or so.
My step-niece was born early, I want to say 25 weeks or so, and as a baby she was fairly lucky... but she's got a lot of sensory concerns, CP, learning disabilities, etc. now. I'm not saying I wish she wasn't alive (even though I don't talk to them anymore), I'm just saying that both of those kids are pretty lucky and some of the babies the doctors end up "saving" live pretty tormented lives.
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If it survived, it was strong enough for life in the mountains of Tibet.
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