Several other thoughts. First, we may want to distinguish between the objectives and the means. Joel's concern about the hysterectomy is primarily related to the surgical risks. However, an alternitative approach to attenuating growth is to adjust the caloric intake. In fact, since such children are provided nutrition through a feeding tube, the family and physicians must make a conscious decision about their goals for the size of the child. Limiting calories to reduce growth velocity will result in a shorter height. Alternatively, while large amounts of calories will only have some impact on height, it can increase weight significantly. Would we find this case less startling if parents were requesting recommendations for the amount of calories to limit her growth? Further, regardless of what providers recommend, the parents are the ones feeding the child, so they could do as they please in their home. What distinguishes the current case is the request for the involvement of health care providers to helping the family reach their goal.
Second, the while the parents are doing their best to anticipate how difficult it might be to manage their child as she got larger, their prediction is speculative. It is possible even if she were larger; they would still find a way to maintain her mobility and family engagement. While it is impossible to predict how she would be care for as she got larger. Some issues that seem insurmountable when looking forward become more manageable when the situation is at hand. But it doesn't always go that way. I do think that after sufficient discussion and exploration by the family, that a decision to limit growth because of this concern could be reasonable. I do think that we should respect parents' wishes to make such decisions, particularly after such prolonged engagement and discussion.
Third, like Dr Fader, I am most concerned about the surgical risks. But that may reflect me not being a surgeon. However, there are a range of surgical procedures that are often performed on children with profound disabilities to improve their care. These may include some relatively simple surgeries, i.e. gastrostomy placement (feeding tube), tonsillectomy (to reduce airway obstruction), tracheotomy (to facilitate airway suctioning), as well as more significant interventions; i.e. fundoplication (to reduce reflex), and spinal fusion (to prevent further scoliosis-which can affect positioning). Some families choose not do such surgeries because they believe that they can achieve the goals through simpler measures, which others families decide to use such approaches. I think that parents who might be considering the issue of hysterectomy would benefit from studies that describe caregivers and children's experiences with menstruation to provide more guidance about the its impact on quality of life. But it is not uncommon to balance surgical risks for children with disabilities in order to improve their quality of care.