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Little T has a brachioplexus lesion

Little T's hemo apt went well. Blood stats all normal. Arm still shrinking. No can explain why he falls over while sitting. He needs to be referred to neurology. Just once I'd like to be told "Don't worry, it's normal." Used to happen all the time at checkups with Special K. Oh well.

The brachioplexus doctor told us Little T has a brachioplexus lesion caused by either his tumor or his birth or both. He said we'll never know the cause. He said it's too early for a prognosis. He's only seen three cases in thirty years with a massive tumor like Little T's of varying types. "All had a limb that had some use, not something they just looked at. None were completely normal." We wait until Little T is older to see what happens. He talked about possible muscle grafts several years from now.

Believing his birth caused lasting damage really hurts. His birth was a major life-threatening trauma for us both. And utterly preventable.

I was hassled for not taking pitocin which almost certainly would have killed him. When I was checked in, a nurse felt Little T's massive left arm and thought it was his head. Concerned, she asked for an ultrasound. The OB on call waved her ultrasound wand at his head, and sneered at the nurse. "See. Head." If she had bothered to look where the nurse had felt, she'd had seen his arm and I'd have been rushed in for a c-section.

I'd thought to ask to look at his body, and for a while I blamed myself for not asking. But later I realised the OB would have merely sneered at me too. She'd been sneering since I refused pitocin. Sadly C wasn't there and I forgot about the incident as I went into active labor.


( 10 notes — Leave a note )
Aug. 9th, 2006 03:43 am (UTC)
I made some awful mistakes both with Emily's birth, and as a parent when she was tiny. I beat myself up for them for years, until somebody finally helped me realize that I can't change the past, the actions of the doctors or myself, or everything that happened. And now, at six and a half, my daughter has recovered her spirit and is thriving. Our challenges together are what made her who she is today.

It sounds like Little T is also thriving. He has some obstacles to overcome, but that's what makes Little T who he is. Being angry that this could have been prevented won't prevent it from having happened. That's what I had to come to terms with. I kept trying to change the past with my thinking, and I couldn't. That was very frustrating. Finally I had to let it go, and see it from a different light.

Oh, and I do understand that you need to feel the anger you feel. You can't shove that down, deny it, or try to make it disappear. I only mean that there will be a time to let it go, too.

I hope this helps. If you want to know what happened with Emily, I'll e-mail you.

Aug. 9th, 2006 11:10 pm (UTC)
It does help, thank you. It helps me to know that I'm not alone. It helps to hear that other women felt shame and blamed themselves for not having the perfect birth. I think there's too much pressure on we mothers to have the perfect birth and not enough talk about how yes things can go wrong. I
Aug. 9th, 2006 05:13 am (UTC)
The preventability is maddening, I had similar issues with Tovar: I was concerned about prematurity running in my family and the doctor told me not to worry about it. The birth might have been premature anyway, but they probably could have held it off longer or maybe made it full term if the doctor had taken me seriously instead of trying to help me not worry.

I try to focus on other perspectives, such as the prematurity did run in my family, and if it wasn't for the hard work of so many people, or if it had been a few years earlier before modern technologies, we would have almost certainly lost him. And I have a better doctor now ;)
Aug. 9th, 2006 11:44 pm (UTC)
I'm glad you found a good balance for you between moving on and advocating for something better. I should probably get a different OB, though we're not planning to have any more kids.
Aug. 9th, 2006 11:48 pm (UTC)
I'd be happy to give email you info on my new one if you don't mind a male OB. I've only seen him once, but I liked him and he was recommended to me by a really cool NICU neonatal doc.
Aug. 9th, 2006 06:18 am (UTC)
Dunno what to say, but

Will I see you at the potluck tomorrow night?
Aug. 9th, 2006 11:45 pm (UTC)
Thanks for the hugs. They're always appreciated. You sure will.
Aug. 10th, 2006 12:47 am (UTC)
My best friend from high school has an older brother who has dramatic developmental issues. He didn't look like a Down's child, but his mental abilities were/are about the same. What's up? Forceps delivery. He suffered permanent brain damage.

Of course, you know that medical error is human error, and rampant. "An average of 195,000 people in the USA died due to potentially preventable, in-hospital medical errors in each of the years 2000, 2001 and 2002."
Aug. 12th, 2006 12:53 am (UTC)
Aww, poor kid.

That statistic is sobering. Thank you for pointing it out. I've seen it myself since unfortunately Little T's birth wasn't the only time hospital errors have been made that threatened his life. I guess I don't dwell on those, because I prevented them from damaging him permanently. And after the errors were made, people recognised them and tried to prevent the problem from happening again. In the case of his birth, I feel nothing has been done.
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Aug. 12th, 2006 12:57 am (UTC)
Thanks Strata! I share the same belief as you. I do believe Little T's arm will work more than it does now, but I don't envision a form for its working, because I think that's his job.
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