cmotherofpirl Posted November 2, 2006 Share Posted November 2, 2006 Should severely disabled kids be kept small? 6-year-old given hormones to stunt growth so parents can care for her Reuters Updated: 6:23 p.m. ET Nov 1, 2006 NEW YORK - In a report published in a medical journal this month, two doctors describe a 6-year-old girl with profound, irreversible developmental disability who was given high doses of estrogen to permanently halt her growth so that her parents could continue to care for her at home. The controversial growth-attenuation treatment, which included hysterectomy, was requested by the child's parents and initiated after careful consultation and review by an ethics committee. In their report in the Archives of Pediatrics and Adolescent Medicine, Drs. Daniel F. Gunther and Douglas S. Diekema, both at the University of Washington in Seattle, explain the reasoning behind what they hope will generate a healthy debate. Gunther is at the Division of Pediatric Endocrinology, and Diekema is at the Center for Pediatric Bioethics. Caring for children with profound developmental disabilities can be difficult and demanding, they note. For children with severe combined neurologic and cognitive impairment who are unable to move without assistance, all the necessities of life — dressing, bathing, transporting — must be provided by caregivers, usually parents, and these tasks become increasing difficult, if not impossible, as the child increases in size. "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. After extensive evaluation, the combined opinion of a team of specialists is that the child will have no significant neurologic or cognitive improvements. The onset of puberty and continued growth caused concern in the parents about how they would care for their daughter long-term, which they clearly wanted to do. They were concerned about having to turn over care to "strangers" and also about the complications that would arise when the child started menstruating. The child is now a little more than a year into growth-attenuating therapy and approaching the end of her growth, Gunther and Diekema report. "As of yet, there have been no treatment complications." The authors feel that growth arresting therapy can be "both ethical and feasible and should be an option available to parents." The authors of a commentary applaud Gunther and Diekema for publishing this case report, although they believe that attempts to attenuate growth are "ill advised." Nonetheless, Dr. Jeffrey P. Brosco from the University of Miami and Dr. Chris Feudtner from the University of Pennsylvania, Philadelphia, say that by beginning the debate, this paper helps to "advance our ethical dialogue as we struggle to define our core values in words, laws, and deeds. Only with further research and public discussion will we learn whether attempts to attenuate growth run with or against our fundamental values in caring for children with profound developmental disabilities." Copyright 2006 Reuters Limited. Link to comment Share on other sites More sharing options...
Guest T-Bone Posted November 2, 2006 Share Posted November 2, 2006 I'm sure certain members of this forum will contrue this as an injustice and label her parents as evil, but I can tell the parents of this young girl have thier heart in the right place. Link to comment Share on other sites More sharing options...
Red Knight Posted November 2, 2006 Share Posted November 2, 2006 I agree T-Bone that their hearts are in the right place, however, the treatment appears to be a selfish reaction. It's a diificult situation, no doubt, I'm am not sure what the right answer would be. Link to comment Share on other sites More sharing options...
cmotherofpirl Posted November 2, 2006 Author Share Posted November 2, 2006 Having helped care for a severely handicapped child who was already 5'9" at age 14 I can understand where the parents are coming from. Link to comment Share on other sites More sharing options...
RC_ Posted November 2, 2006 Share Posted November 2, 2006 Wow... That's a hard one. I beleive that the parents that do this have good intentions. I beleive that the parents that do this would not be able to care for their children once they reach adulthood. I beleive that the parents want to keep these treasures in the family, and not send them away. I beleive that this is an act of love. I am unable to see how these actions go against Catholic teachings. I do have a physical disability. I personally would not have wanted this particular thing done to myself, even if I was unable to assist with my self care. I also would have wanted to be able to stay with my family if I was unable to assist with my self care. [quote]Nonetheless, Dr. Jeffrey P. Brosco from the University of Miami and Dr. Chris Feudtner from the University of Pennsylvania, Philadelphia, say that by beginning the debate, this paper helps to "advance our ethical dialogue as we struggle to define our core values in words, laws, and deeds. Only with further research and public discussion will we learn[b] whether attempts to attenuate growth run with or against our fundamental values in caring for children with profound developmental disabilities."[/b][/quote] If they run with the current medical profession's values in caring for persons with profound disabilities, that would be a very said thing. (ie. Terri Shivo.) Link to comment Share on other sites More sharing options...
Mary-Kathryn Posted November 2, 2006 Share Posted November 2, 2006 No. This is the ultimate in selfishness. The child has a right to grow naturally. We all face these fears as special needs parents. For parents of profoundly involved children their cross is heavier to bear, but physically altering your child this way is not acceptable. The hysterectomy of a child at age 6 was certainly out of control. Let the child be. Let him/her grow. Go from there. Link to comment Share on other sites More sharing options...
IcePrincessKRS Posted November 2, 2006 Share Posted November 2, 2006 That is a tough one... On the one hand I can understand wanting to stunt the child's growth to a certain extent to make caring for her easier... but I have to agree with Mary-Kathryn, too, a hysterectomy on a 6 year old just seems to be taking it to the extreme. Link to comment Share on other sites More sharing options...
KizlarAgha Posted November 2, 2006 Share Posted November 2, 2006 I think the parents are doing the right thing in this case, with a couple of caveats. Are there adverse health consequences to doses of hormones at such a young age? I know quite a bit about high doses of estrogen and they're fairly safe. Blood clots are the biggest concern and are common with both estrogen and oral contraceptives which contain estrogen. However, I don't have any clue what those doses would do in a child in terms of side-effects. I'm going to forward this to one of my university doctors and see what he has to say in terms of the possible negative health consequences. Link to comment Share on other sites More sharing options...
RC_ Posted November 2, 2006 Share Posted November 2, 2006 I do not see the parents as selfish. I see them as desperate people in a hard situation. Link to comment Share on other sites More sharing options...
Mary-Kathryn Posted November 2, 2006 Share Posted November 2, 2006 [quote name='RC_' post='1108782' date='Nov 2 2006, 01:33 PM'] I do not see the parents as selfish. I see them as desperate people in a hard situation. [/quote] What is desperate? This is a child--a human being who does not deserve to be neutered like an animal. This is a child who deserves to live her life naturally. Finally, this is a child who does not deserve to be physically altered in order to alleviate the worries or sufferings of another person. Link to comment Share on other sites More sharing options...
KizlarAgha Posted November 2, 2006 Share Posted November 2, 2006 [quote name='Mary-Kathryn' post='1108903' date='Nov 2 2006, 03:46 PM'] What is desperate? This is a child--a human being who does not deserve to be neutered like an animal. This is a child who deserves to live her life naturally. Finally, this is a child who does not deserve to be physically altered in order to alleviate the worries or sufferings of another person. [/quote] I think if the child were mentally capable of making the choice, she would be willing to make a sacrifice for her parents who have sacrificed so much for her. If I were in a position where I needed constant care, I would certainly want to make it as easy on all involved as possible, even if that meant sacrifices on my part. Link to comment Share on other sites More sharing options...
RC_ Posted November 2, 2006 Share Posted November 2, 2006 [quote name='Mary-Kathryn' post='1108903' date='Nov 2 2006, 03:46 PM'] What is desperate? This is a child--a human being who does not deserve to be neutered like an animal. This is a child who deserves to live her life naturally. Finally, this is a child who does not deserve to be physically altered in order to alleviate the worries or sufferings of another person. [/quote] They are not neutering her like an animal. You neuter an animal to controll reproduction. They are performing the hysterectemy for a health benifit. A disabled person has a right to live with people who love them. This dear soul would not recieve this right unless this procedure happened. Link to comment Share on other sites More sharing options...
KizlarAgha Posted November 2, 2006 Share Posted November 2, 2006 Plus it opens up a whole new bio-engineering fashion. Imagine, you could keep your eight year old children cute forever! Hmmm.... Link to comment Share on other sites More sharing options...
cathoholic_anonymous Posted November 2, 2006 Share Posted November 2, 2006 It's a painfully difficult question with no clear-cut answer. Although I sympathise with the parents' motives - they clearly love their daughter very much - I do think this action is unethical. People often assume that 'having a good quality of life' equals 'having a life that is easy to manage', but that just isn't so. Link to comment Share on other sites More sharing options...
RC_ Posted November 2, 2006 Share Posted November 2, 2006 Here's a question: Does this increase or decrease an individual's quality of life? Link to comment Share on other sites More sharing options...
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