Should parents halt a disabled child's growth?
Usually when you hear about hormone treatments being given to children with special needs, it involves efforts to help a child reach maximum height. But here's a procedure that's aimed at doing just the opposite: a growth-attenuation treatment that was used to keep a six-year-old girl with severe disabilities as small as possible so that her parents could easily care for her into adulthood.
Her doctors have reported on the treatment in the Archives of Pediatrics and Adolescent Medicine, at least in part to get a debate going on whether it's ethical or not. The girl was given a hysterectomy as well as high doses of estrogen to halt her growth and avoid the difficulties that menstruation and an adult height and weight would present for those trying to care for her.
Her family hopes to avoid institutionalization and extend home care by keeping the child at a size they can easily lift and move, and that seems understandable and responsible. And yet ... something about freezing a needy child in time this way doesn't set quite right, does it?
Do you approve of this sort of procedure? Pick a response from the poll at right, then give the doctors their debate in the comments.
Update: Read more about the treatment mentioned here on the family's Web site.
Comments
My first instinct was to say that this should not be done. But after reading the article, I changed my mind. I can see the parent’s point now that I know she will not develop much further. She is functioning at about a 6-month-old level, doesn’t walk, etc. If her parents and siblings will be able to care for her lovingingly themselves if she remains small, then it is the best thing for her in this particular instance. I do, however, think that each situation would need to be carefully appraised before making such an important decision.
I have been a single Mom to my severely disabled son for 11 of his 13 years. I have firsthand opinions on this matter. My child has a naturally slow growth rate and is considerably smaller than most teens his age. He is quite healthy and very well adjusted to his size. The strain that additional size would put on his heart and body by far concerns more than his being smaller than average. But I agree with Cythia that each situation should require much consideration.
Our son is severely disabled with Cerebral Palsy. When he was younger/smaller he was able to use a pony walker, stander, we were able to travel with him, go to the beach, hikes etc. We moved alot with the military and so there was a lot of traveling. At 12 he went into puberty. By 13, due to no trunk control…he was spastic yet floppy…he developed an 82 degree curvature within one year. At 13 he had full spinal surgery with dual rods. He continued to grow. His surgery was posterior and anterior wasn’t an option due to high risk. His vertebrae rotated, his rib cage rotated as well as a bar in the hardware. He developed an infection and had yet another surgery to remove the bar. He will be on antibiotics for the rest of his life to contain the remaining bacteria on the rods. Removing them isn’t an option. He now has severe restrictive lung disease due to the right lung being compressed between the spine and the deformed rib cage. It’s smaller than it should be and doesn’t function as well as it should. His left lung is enlarged, with two areas that are collapsed. He will be getting further testing to determine if he needs a trach and assisted breathing device. All that said my point is this. If we could go back and prevent him from going into puberty, kept him small, could we have avoided all of this? Could his life continued to be “quality” vs pain, spasms, and now a life threatening situation. As it is I messed my back up nearly falling while lifting our son and haven’t been able to lift him for the past 2-3 years. My husband lifts him but due to the twisting and all of our sons back he’s not really comfortable being lifted or sitting any length of time in a wheelchair even though it’s molded to his body…basically our son has been virtually imprisoned in his body for the past three years with little outside time other than hosptitals and doctors…to me that’s not quality of life and watching my son suffer, knowing that the odds are he will die due to pulmonary issues…not a fun thing for all those out there that would pass judgement. When you have walked in the shoes of a parent of a severly disabled child with many medical issues then maybe what you say will be given weight. I do not feel that all disabled children should have it done, but for those that are very severe I do feel it should be an option.