quote:Originally posted by Jhai: I don't want to believe the basic premise either - but I can imagine how troubling it would be to understand it.
I don't not want to believe it; I find it blindingly impossible.
I actually have a similar issue with "Understand", which I just finished. That's not how extra synapses work; too many connections interfere, they don't make things better. If he had used less technical language, I think I would have had an easier time believing it -- I love the movie Phenomenon, and it's no more believable on a physiological basis.
Posts: 32919 | Registered: Mar 2003
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My daughter had a major vascular abnormailty that we had surgically removed, so I can offer a parent's perspective. Aerin had a giant hemangioma on her right shoulder. It showed up about 5 days after she was born (14 weeks early) and continuted growing for approximately 14 months. It was pedunculated, meaning it had a stalk like a mushroom, and severely ulcerated. Here is a link to a picture of it.
I did not want her to have the surgery for a very long time. It never bothered me and we never got any ugliness from strangers. It didn't interfere with the use of the arm or shoulder. Most hemangiomas resolve themselves and we had already been through 96 days of intensive care with Aerin, so I was very resistant to any kind of medical intervention. I eventually changed my mind, but I never stopped agonizing about our decision.
We went ahead with the surgery for a few reasons. The main one is that the hemangioma was severely ulcerated and oozed and bled continuously, to the point where Aerin struggled with anemia. There was always a serious risk of hemorrhaging, which increased as Aerin got bigger and more active. We had one major incidence of hemorrhaging that involved an ambulance ride to the ER and could have required a transfusion. Another risk was infection. Aerin essentially had a large, open, non-healing wound for almost 2 years. Finding a way to bandage it took a long time. Regular bandages melted the scabs and caused bleeding (hemangiomas are very warm). Our plastic surgeon eventually recommended a silicone bandage, which I secured with gauze. This was not to hide the hemangioma, but to protect Aerin from infection. Though this wasn't a consideration in our decision, winter was a big problem for us. We couldn't dress Aerin in most long-sleeved clothing, including coats and sweaters.
Despite all this, I did not want her to have the surgery. Vascular surgery is dangerous, particularly on children. Massive blood loss is the main danger. There was also the possibility of nerve damage, loss of function in the arm, and a skin graft. We took her to specialists all over Virginia and all but one of them recommended surgery (the dissenting one recommended embolization, which I was completely opposed to). The surgery went better than the surgeons' best case scenario. It was under 3 hours, required no transfusions, and no skin graft. She was only in the hospital overnight and had the stitches out in 3 weeks. Here is the album of her surgery (warning: some of the pictures are disturbing).
The surgery did leave a large scar, which I will never have treated in any way. If Aerin wants to have it revised, she will have to wait until she's 18 and can pay for it herself, because I will never consent to a non-life-saving surgery. To me, her scar is a badge of honor, an outward symbol of her strong and extraordinary spirit. Aerin also has a herniated bellybutton from the umbilical lines they put in when she was born. I have no intention of ever having that revised, either.
On the other hand, I don't know that I wouldn't change my mind if Aerin came home crying from school every day because kids made fun of her. I am generally not in favor of removing every single bit of adversity from a child's life, but I also can't stand to see my child suffer.
While I certainly can't speak for other parents, I feel confident saying that the decision to have a birthmark or vascular anamoly surgically treated is never made lightly. I also feel that it's made with the best of intentions for the overall welfare of the child. I've seen people with deformities be successful and well-adjusted and I've seen others be devastated and hindered by them. This is such a complicated issue that it almost needs to be decided on a case-by-case basis. I, however, do think that insurance companies should pay for the treatments if that's what the families choose.
Posts: 3037 | Registered: Jan 2002
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I was trying to find pictures online. There are a few but not many of Sophie Simmons. She has a pretty significant facial birthmark. Now it isn't over 50% of her face or anything but it is still pretty large and irregularly shaped.
Most pictures have her facing the direction that her facial birthmark doesn't show. The Gene Simmons family jewels show, has lots of casual shots of her with the birthmark clearly visible, also lots of video and pictures of when she was a baby too.
I've wondered if they have had it lightened. Clearly they could afford it. She obviously uses makeup to cover it sometimes, but not all the time. On the other hand Sophie Simmons has matured into a strikingly beautiful young woman, and seems to be as grounded and well adjusted as anyone with celebrity parents could ever be.
Posts: 11265 | Registered: Mar 2002
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quote:I don't not want to believe it; I find it blindingly impossible. [Wink]
That's what's so great about the story. What if you convinced yourself of something that was blindingly impossible, and fundamentally undermined your relationship to the universe, but you couldn't believe any other thing?
Posts: 4287 | Registered: Mar 2005
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Temperament can vary so widely from child to child, even within the same family. For a particularly high-strung child (or one particularly sensitive to nonverbal communication, or what have you), something may prove intolerable, whereas the same situation might be no big deal to another. Or vice versa. Parenting and changing the external environment can help a lot, but there's little doubt that temperament can't really be changed past a certain point.
Like Mrs. M, I think the complexity and importance of these situations are such that decisions almost have to be made on a case-by-case basis. For insurance coverage, this often means that professional assesssment with strong involvement of the family plays a role in determining what is and is not an undue burden. Even with guidelines, almost all these things come to judgment calls by somebody, even with what appear to be purely medical matters.
Posts: 14017 | Registered: May 2000
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