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Friday, November 9, 2012

More on Dr. Pauli's Visit

I forgot to talk about the whole last part of the appointment with Dr. Pauli, so in my next post I'll talk about our gathering post-appointment. (I don't dare say tomorrow, since the way my week's been, it might be longer than that)

Honestly, I didn't go into his office with a lot of questions. I figured he'd know better than us what we needed to know. Basically, I wanted to know Belalu is going to be ok health-wise and I was curious if he could give us an idea of her adult height, since the range for hypo, depending on where you look, is about a foot difference. And we wanted to talk treatments and get his opinion on them.

In terms of her height, he said that right now she is actually still on the AH growth chart, which surprised us because no one else has found that to be true. So, she is way at the top of the acon chart. (There is no hypo-specific growth chart). If this is true, right now she is "tall" for having hypo, but since J and I are both exactly average for our sex, it is most likely that she will also be average for her condition- which I think would put her at about 4'6" at her full adult height. Dr. Pauli said that the best age for predicting adult height is age 2- until then we really have no way of knowing.

After talking to him, we both came away with the impression that she will not be disabled, either due to health conditions or her height. She will face some challenges adapting to a world made for taller people, but she will not be hindered from doing what she needs/wants to do.

This led us into talking about possible treatments. We have decided not to pursue growth hormone therapy. As her mother, I think she is perfect the way she is.  I won't actively encourage the limb-lengthening procedure, but if she decides that it is something she wants to do, I will support her decision. J is approaching things a bit differently. Whenever we talk to someone about her condition, he brings up limb lengthening, saying "if that's something she wants to do." He wants to keep her possibilities open and also I think it assures him in a way that she does have this option. I'm concerned that if we raise her telling her that she can do this in the future if she wants, that we are cultivating an environment in which it is implied that it is something that she should want to do. Of course, a lot of this depends on how we express this idea to her, and we still have some years to figure that out, but we'll be talking about it to her brother before then, and it will surely come up in conversations with others along the way. I want to make sure we're cognizant from the beginning about how we talk about her condition at home and to others.

We also recognize that our perspectives are shaped by our culture. A much higher percentage of little people in Europe decide to proceed with limb-lengthening surgery than in the U.S. (I don't have exact figures right now, though I'd like to find them in my *ehem* free time). Dr. Pauli mentioned the concept of "bella figura" in Italy, where one's exterior is believed to be a reflection of one's interior beauty. J says he thinks the difference between the perception of limb lengthening in the U.S. and in Europe is the difference between individuals adapting to society (Europe) vs society adapting to individuals (U.S.). I would be interested to know others' opinions on this. I have seen plenty of evidence of people in Spain working to make their society more open and accessible to all. I think in the majority of cases, the reasons behind the decision have to be more than just conforming to society, and are likely to be as varied as the people opting to do it.

Since each of us are approaching this subject from a different angle, we had different questions for Dr. Pauli. Recognizing that his answers were anecdotal and not scientific, J asked if anyone who had done the surgery regretted it, and he said no. When I asked if he had met anyone who had decided not to do the surgery or hadn't been given the opportunity to do it and wished they had, he said no. I then asked if he thought that the family culture and one's experience with LPA affected someone's perception of limb-lengthening, and he said he thought that it did. There are many cases, though, some that I know personally, where the parents didn't push the procedure, but the child wanted it.

The limb-lengthening procedure will only get better and less invasive in the coming years, so for now we're going to be aware of it and we'll see what Sabela thinks about it as she gets older.

2 comments:

  1. I have read your post and smiled :-)... Must write 3000 words about promoting inclusion by Monday but will be back with comments longer than the original post as usual :-))) Hugs. R

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  2. So I am back... This is not published at all, so please view this as my personal opinion... I feel that the average height for girls with this mutation is somewhere between 128 - 135 cm. I will be very interested what estimate you guys and we will be given next year.
    I think we have spoken about the question of lengthening and how not to brainwash one's child, but how to offer options quite a bit... I should post about this topic, shouldn't I...

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