Should severely disabled children be kept small?

Interesting case where growth-attenuation therapy is used to permanently halt a 6-year old’s growth so parents can continue to care for her at home:

“Achieving permanent growth attenuation while the child is still young and of manageable size would remove one of the major obstacles to family care and might extend the time that parents with the ability, resources, and inclination to care for their child at home might be able to do so,” Gunther and Diekema write.
The parents of the 6-year-old, both of whom were college-educated professionals, indicated a strong desire to continue caring for their daughter. Despite having the neurologic development no greater than that of an infant, the 6-year-old responds to her parents and two healthy siblings — vocalizing and smiling in response to care and affection — and “clearly is an integral, and much loved, member of the family,” the authors note.

(via a reader tip)

Comments

Gasman
And why not. Parents enlist the health care system to growth enhance their constitutional short stature (no disease state, just smaller than their peers) kids in order to achieve goals no more noble than these parents.
Carol
I wonder where the idea originated? This seems so weird. Was it the parents sitting around going “if only” or did they say something in jest at a doctors appointment and the doctor said “well now that you mention it”. I’d love to know who brought it up first!
Eileen
I cannot even believe that someone would come up with such a procedure in the first place. How do you think the person you are keeping small will feel??? and yes everone feels!!!! Kept small and treated like a young child. I am horrified and am reminded of Hitler and his perfect society. Eileen
Karen
Came across this site looking up something else. This is an issue that strikes a cord with me because our son has severe cerebral palsy/profound deafness. He was able, while small, to use a pony walker, stander, kick his feet and go in circles and had a pretty decent quality of life. At 12 he hit puberty. By age 13, due to very poor trunk control, his spine could not support the growth. Within one year he went from a good spine to an 82 degree curvature that required spinal surgery, dual rods etc. He was 13. By 15 he’d continued to grow and the vertebrae rotated as well as his entire ribcage. He is now 16, unable to sit comfortably even in a molded wheelchair for long periods, no more pony walker, no stander, spasms, his body twisted. Due to the rotation of the ribcage/vertebrae a piece of the hardare rotated causing irriation from inside and an infection, requiring surgery to remove the bar. They were unable to remove the rods so now he is on lifetime antibiotics to “contain” the bacteria on the rods. Because he grew, because the spine curved (currently at a 65-70 degree curve, because the ribcage rotated his right lung is smaller than it should be and totally compressed in a cage of the spine and the ribs. His left left lung is over enlarged with two areas of collapse because he breaths from the stomach and doesn’t get air to the far two corners. He has been diagnosed with severe restrictive lung disease. After the next test they will know if he needs a trach and assisted breathing. His abdominal organs are all displaced, stomach compressed. We see a gastro specialist in a couple of weeks. So…my point is…what if we could have kept him small…tricked his body into puberty while small or avoided puberty all together…would he be suffering the pain he is now? Would we be facing the reality that he probably won’t live very much longer due to pulmonary failure? Do I think the idea of keeping a disabled child small applies in all cases? No…do I think it might help children that are very severely disabled…yes. Do I think people who have never been there should pass judgement? No. I get to watch my son slowly die because his body could not support physical growth…plain and simple.
Karen
Told my husband what I’d written when he got home from work. He asked if I’d mentioned the whole issue of a severely disabled almost 90 lb child that basically does not in any way assist in lifting, moving etc…what that does to the parents who have to lift that child but even more what that does to the childs quality of life. When our son was small my husband was in the military. There were times I was left on my own to care for our son. I managed to mess my back up big time lifting him at 55 lbs of dead weight into the van/carseat. We didn’t have a lift. I would then have to lift the wheelchair into the back of the van and secure it with bunjie cords. When our son was little I traveled from California to San Antonio TX for our daughters graduation from basic training for the Air Force…alone..just our 3 year old son & I. Even when he got up to 55 lbs I could still pick him up, put him in his wheelchair and go for walks. We traveled, went on trips, drove from CA to MI for our son’s wedding when his brother was only 4 or 5 years old. Our son had quality of life. We went places, we went to peoples homes, he could be lifted, carried across grass and sand and down to the ocean. The quality of life he has now, along with him almost being 90 lbs and me not even being able to lift him and just take him outside anymore…no…I would give anything to have been able to keep him smaller so that I could continue to pick him up, carry him, take him outside, take him places because that would have been better than being confined to the house imprisoned in his body.

Should severely disabled children be kept small?

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