Would you subject your child to surgery to correct dwarfism?

[Bunny]

I am aware of a young woman who was born a dwarf. (I believe dwarf is the correct terminology for that condition - if not, please forgive me.) Her parents decided, when she was a child, to have surgery on her legs and arms, so that she could achieve a more normal height, and have limbs in proportion to the rest of her body.

This girl had numerous surgeries, and wore pins, screws, and other devices on her arms and legs for several years during her pre-teen and teenage years. These devices would periodically have to be tightened, adjusted, etc.

She is now an adult. I saw her a couple of years ago, and I have to say that if I wasn't aware that she had been born a dwarf, I would probably have not been able to tell that. She had achieved a normal, albeit short height for a woman, and her arms and legs were proportional to her body. She had some of the head and facial characteristics of dwarfs, but they were mild and not very noticeable.

I guess you could say that her parents were successful in achieving a more "normal" appearance for their daughter. I'm wondering if that's something you would do if it were your child? I don't know what I'd do. I work with people with disabilities, and I'm well aware of the difficulties they face, in part because they look "different". But I'm still not sure I would subject my child to years of surgery, pain, and etc. If they could wait until they were adults to have the surgery, it would be their choice. But I think this needs to be done while they are still growing, although I'm not positive on that.

Anyway, what would you do?

[TallahasseeGrannie]

1. I'd have to understand

the problems that untreated dwarfs have before I could do that.
Doing it just for appearance? I don't know.

I wonder how painful the treatment is? I think I would tend to go for it..that's my knee jerk response. I'd hate for her to turn 21 and be angry at me for NOT doing it.

[whatever4]

12. You speak for me too

That sounds about right. It would take a lot of information to make that decision, I can't even speculate. I saw a story about that, many years ago on a daytime talkshow, about a young man that was in the process of that type of treatment. He was shorter due to another condition, I believe. What got me, what really got me, was that the treatment meant basically breaking his bones to grow them longer. His arm and leg bones were broken and pulled apart slightly, gradually with braces and casts, it looked like. It sounds just amazingly painful to me, but I don't really know. He was in his early teens, and seemed happy about being able to grow taller.

I can't imagine making that decision, but like you said TallahasseeGrannie, I would hate for my kid to feel as if I didn't do something I should have. By the time she was old enough to make the decision herself, it would be too late for the growth treatment. So it isn't really something she can decide for herself. Would it be worth it to be "normal"? In society today, it is so darned important to be "normal", I swear it's as if every problem has to be fixed, prettied up, made to function. Instead of just living with ourselves as is. We're all just so perfect, we can't stand looking at things that aren't. I know that isn't unique to America, but, I think we've taken it to it's most extreme sanitized condition. We keep things so clean we make ourselves sick, literally. Overly clean. Experts tell people to have a couple dogs, or a cat, to help stave off allergies in their children. We're that far gone, is how I see it.

On a side note, I have to wonder if the soldiers returning to us with the many injuries that include many more amputees, I wonder if that is going to change how we look at people in America. I know it isn't a large percentage of our population, but it's an awful lot of people. The numbers may say less than 20,000 wounded, but we've circulated over a million soldiers through Iraq, and that doesn't even begin to count the civilians. I have no idea how many of us have been to Iraq, but I living through the experience is going to change enough people that it will change our society, somehow, imvho.

[kestrel91316]

28. They don't "break" the bones in order to lengthen them, they

cut them. It's WAAAAAAYYYYYYYYYYYYY less traumatic and therefore WAAAAAAAYYYYYYYYY less painful. But don't get me wrong, this is still a painful process. We have great pain meds, so it's not completely medieval.

I imagine most achondroplastic dwarves would prefer to be almost normal height. Our society is not known for consistent, pervasive kindness to the deformed, particularly when they are children.

[Roxy66]

31. My son had to wear braces on his legs when he was very little, now he

needs surgery at Shriners Hospital in Portland, Or (age 9), because his femers (upper leg bones) in both his legs are twisting inward. I don't want him asking me, when he is 20 and he is tripping constantly, why I didnt try to do something for him. Yes, I may go that far. We need to think of how we would feel if our parents didnt do what they could for us, when their is a possiblility to help.

[Lerkfish]

2. not for appearance, but if surgery could reduce risk of health problems

associated with dwarfism -- then I would.
People with dwarfism can suffer greatly later in life, mainly due to problems with some internals organs (kidney I think?) and bone pain.
If a surgery could avert that, then yes.
If its surgery to make someone "more acceptable" to the outside world, I say screw the outside world, let them get surgery to implant tolerance.

[murray hill farm]

7. The child, if a preteen even...

would and should have the ability to decide to have or not have the surgery...i would think most would, in part, want the surgery, but not just for appearances sake. our world is built for taller people...the height of a stove..a chair...cupboards...steps..well, everything. it is also much more tiring to walk any distance for a dwarf...many, many more steps to go from point A to point B. So, the surgery, while to some degree is advantageous from an appearance point of view, is really so much more important for just the daily mechanics of living in a world designed for a taller person.

[Lerkfish]

22. actually, the world is not all that built for REALLY tall people...

I'm 6'4", 300 lbs and most of my height is in my torso.
I can only buy 2 models of car of current models that have enough head room for me. Even so, If I'm the first in line at a stoplight, I have to crunch my head down and peer up to see if the light changes.
My Dentist's chair, the hospital gowns, the hospital gurneys, are all way too short for me.
Even when I had my car accident, the back/neck board was a difficult fit.
The MRI machine is narrower than I am so I have to lock my hands together for the entire 45 minutes.
Airplane seats are impossible. I either have to steal the armrest from the other passenger, or fold my shoulders inward to keep from bumping them, and my knees are in my face because there is no leg room.
Ironing boards, counter tops, snow shovels, rakes, and everything else are just short enough I have to half bend over to use them, which wreaks havoc on my lower back.


anyways, sorry for the rant, but I have to laugh when people say the world is built for tall people. Its built for a range of people, just so tall and no taller, just so short and no shorter.

[elehhhhna]

23. 6 '1 & skinny, same deal--

have to fold up like a praying mantis on an airplane.

[Lerkfish]

24. LOL! "praying mantis" is the perfect description!

I once had a 9 hour flight to europe...close to torture.

[Richard D]

25. I'm 6'2" . . .

. . . and not skinny. Long flights aren't close to torture for me, they are torture. Hopeing to get rich someday just so I can do business class. Large doses of valium seem to help.

[mtnester]

26. Heh heh, praying mantis...that sounds exactly like what my son looks like

when he has to sit in restricted space areas. He is 6'1 and wet weighs about 150, with about 5% body fat...he "folds" right up just like you described.

[maxsolomon]

29. go get an old scirocco - an MK1

my bro in law loved his - he was 6'5". we use it as the kids car now, and it is great for the torso-gifted.

i dunno about the 300 lbs. part, though.

[murray hill farm]

30. i said "taller"...meaning taller than dwarf sized.

But, yep....u are in the same boat as the dwarf...just the other end of the spectrum.

[Sapphire Blue]

11. "... let them get surgery to implant tolerance."

If only that were possible!

[soothsayer]

3. That's a tough one. I wonder what a poll of little people (they prefer

to be called that, if I understand correctly) would say.

On edit: i wonder what that girl thinks (the one you are referring to)

[Throckmorton]

4. I would only do medically necessary surgeries

I would not do limb lengthening for its own sake. My boyhood friend Peter was a dwarf, and he had major medical issues with his pelvis and spine. He had over 10 operations between 2nd grade and finishing trade school, all to address issues with posture and joins. He did not have his limbs lengthened.

[BurtWorm]

20. I agree with you. Well said.

Well-chosen avatar, by the way. :toast:

[eShirl]

5. depends, and I would need a lot of info

It would depend on what the prognosis were for the individual child. I know many people with dwarfism become more physically disabled as they grow older, ranging from difficulty walking to having to use a wheelchair. If the surgery would keep a child from having to deal with these problems as an adult, I would have to give it serious consideration. Also I don't see doing it without the informed consent of the child.

[whatever4]

16. That's the type of information I think I'd need to know too nm

[bleedingheart]

6. that is really a hard question to answer...

however the world is cruel, we all know that. If you are the slightest bit different it can make a big difference in how the world treats you.

As a parent we want to protect our offspring from being hurt and we want to insure that their future is better than our own, so I would have to say that I would weigh all options and do what I thought best at the time.

My son has Asperger's, I have him enrolled in therapy to help him fit in better with the world...in a way it is somewhat similar to the parents who authorized the surgery.

[goddess40]

8. It's sad but I probably would, if the risks weren't too high

I know that all surgeries have risks and pain, but people can be such assholes. Bullies don't stop when they hit high school, or we wouldn't have had Columbine. It doesn't stop ever - look at our White House.

My son's both have a Nonverbal Learning Disorder (NLD) with the younger one being borderline Aspergers and I would do anything realistic to help them.

[eallen]

9. Near-normal length limbs bring some real practical advantages.

There is a very real sense in which the world is made for people who fall within a range of "normal" size, and configuration, and capabilities. Everything from the height of counters, to the distance between steering wheel and foot controls, are planned around this norm. Even something as slight as hand preference causes southpaws constant awareness that they are the minority, and the world is designed for the majority. Recent decades have brought much greater emphasis on accessibility in design, but that is far from eliminating such differences. I can imagine that this plays a real consideration in a parent's thinking.

I doubt anyone can answer your question with confidence, until they have been through the exercise themselves. There are many issues involved. The one I listed above isn't the most important, but one often not given the importance it deserves by those of us lucky enough to fall within the normal range.

[bluedawg12]

10. Under 4'8" makes it hard for certain activities

I think adult water fountains are an example.

Also, a societal ingrained prejudice in favor of height.

The surgery called limb lengthening surgery is done with an open portion that surgically cuts the bone allowing for lengthening.

A device called an external fixeter is applied. Pins are attached to the bone through small skin incisions. The device is then secured to the pins. After that the length is increased 1 mm. daily.


Meticulous skin care is needed with daily cleansing, a little peroxide and some antibacterial ointment.

Once the desired or maximum length is reached the pins are removed in minutes with a quick out patient procedure.

Length can be achieved in skeletally mature individuals, it's called osteogenesis, an ex-fix called an Ilizarov device is applied.

These devices are more commonly used in the management of extremity fractures, and the bone lengthening is also used for fractures that have segmental loss of length where about 2" of bane can be grown to fill the gap from bone loss due to trauma.

Probably a little easier to do this in kids, rather than interrupt college or work as an adult.

Also, limb lengthening in adults has the added difficulty of trying to obtain bone length while gently stretching muscles, tendons, nerves and vessels, while in kids the soft tissue is still growing and can be more easily lengthened.

I think this is something that can greatly enhance the quality of a child if done properly, sad to say we are a society that has strong biases about looks and beauty and height is considered a plus.

[bluedawg12]

13. Here is some info. and pics

http://www.vardaan.net/ilizarov.htm
The Ilizarov Method of Treatment
The Ilizarov Method uses Ilizarov's Principle of DISTRACTION OSTEOGENESIS (osteo=bone, genesis=formation). This refers to the induction of new bone between bone surfaces that are pulled apart in a gradual, controlled manner. The distraction initially gives rise to NEOVASCULARISATION (Neo=new, vascular=relating to blood), which is what actually stimulates new bone formation. In addition, there is simultaneous histogenesis (histo=tissue) of muscles, nerves and skin; in bone diseases (osteomyelitis, fibrous dysplasia, pseudo-arthrosis) this new bone replaces pathological bone with normal bone. This is a revolutionary concept; diseases for which earlier there was no treatment are now successfully treated using the Ilizarov Method.

http://mednews.stanford.edu/stanmed/1999summer/magician.html
Ilizarov (1921-1992) developed his limb-lengthening technique somewhat by accident, while practicing in medically underserved Western Siberia, where many of his patients were World War II veterans suffering from compound gunshot fractures. To heal these difficult fractures, he developed an innovative technique, one that eventually proved successful for lengthening bone. He cross-inserted two to three thin, flexible wires (originally, he used bicycle spokes) through the broken bone above the fracture site, and two to three wires below the fracture site. The wires transected both the fractured bone and the soft tissue. He secured the ends of the upper set of wires to one metal ring encircling the limb and the ends of the lower set of wires to another metal ring (picture two bicycle wheels perpendicular to the limb, one wheel above the fracture, one below). After positioning the bone fragments by manipulating the wires and rings, he anchored the two metal rings to each other via external rods running the length of the limb. Strong, yet flexible, the apparatus accommodated body weight and motion, stimulating the growth of new cells between bone fragments.

[KittyWampus]

17. China Has Paved The Way, IIRC. A Significant Number Of Chinese Adults

are subjecting themselves to such treatments, wanting to be taller.

Rising Chinese middle class has disposable income.

[bluedawg12]

19. Like any thing, a technology that starts off for a rather narrow

use can be expanded by societal desires.

I think limb lengthening in adults is trickier.

But, I have heard that bilateral limb lengthening surgeries in Chinese adults is catching on.

Look at the explosion of cosmetic surgery in the US.

I think, IMHO, that a face lift is a pretty gruesome surgery, the face is peeled off and then tightened back up behind the ears and hair line. Yet, I have friends that feel as if their life has be regained by simply looking youthful.

These medical decisions are so personal that it all varies by individual needs and wants.

It's the old risk: reward thing.

[whatever4]

21. That was very informative!

You also answered one of my questions, which was the age at which this could be done. It sounds like something that wouldn't have to be done as a child then. I wonder if having it done at the youngest age possible would be the easiest on him, and most healthy longterm? Just knowing that it could still be done later makes a difference though, if your child strongly objects when he's the optimum age for the procedure.

It's so easy to get to be a parent, and then so hard to live up to it sometimes, isn't it?

[bluedawg12]

33. whatever4- well said! Parental duties are challenging

and today's wolrd is a very difficult place to maneuver.

I think the timing of leg legnthening is best decided by surgeon and family, it has to do with knowing the predicted height and growth remaining predictions.

Interesting thread for DU. LOL.

BTW- if anyone is interested there is an expert in Md. Dr. Dror Paley as an FYI.

[mondo joe]

14. It would depend - I'd be inclined to do it.

But there are a lot of factors that come into play.

[murielm99]

15. This may not be comparable, but

we know a family whose son was born with a cleft palate. He had a couple of surgeries when he was a baby.

Later, he rejected cosmetic surgery to improve the appearance of his upper lip and philtrum. He was satisfied with his appearance. It is barely noticeable, unless one knows what to look for. He wore a mustache for awhile, but now does not.

Cleft palate surgery is delicate. The recuperation period is not fun. It still does not sound as difficult as pins, screws, etc. I would weigh the decisions carefully, depending on whether they were cosmetic or medically necessary. I suspect this surgery had to be done while the girl was still growing.

[bluedawg12]

18. The pins and screws technique is actually minimally invasive

the only iinvasive portion is the open osteotomy of bone, generally done once at the begining.

The pins and external fixeter technique is routinely used on shattered tibia fractures.

I have seen it used in a four year old run over by a car. The shattered little tibai would have been a nightmare to treat in the old fashioned plate and screw method. Instead the leg was set, four pins were inserted through the skin and the semi circular frame applied. 8 weeks later is was removed, the bone healed, the shattered pieces united, the child had four little puncture marks barely visible, and he will grow to be a normal man, and the little pin hole scars will not be visible on his grown legs.

[msrbly]

27. Surgery is a little harsh but . . .

I'm on the short side (4'11") and when I was 12 years old my parents asked me if I wanted to take growth hormones. I declined but today wish I hadn't. Although the world isn't fashioned for exceptionally tall people, it isn't designed for short people either. The counter at the bank comes up past my chest. I'm a lawyer and my head just peaks above the judge's bench (some judge's can't even see me). I never know what kind of toppings they have at subway because I can't see over the counter. I often leave clothes in the bottom of the washer because I can't see them and can't reach them. Nearly every time I go to the grocery store I end up climbing up the shelves to reach an item I need or having to ask for help. I feel like Edith Ann in most chairs and couches. In cars I have to have my seat very close to the steering wheel and I can't find a mechanic to turn off my airbag because of liability concerns. Lots of inconveniences I could do without.

[ck4829]

32. If it was for medical reasons and the child would also want to have it too