Rob and Janine live in New Zealand with their three kids. Their oldest child, Daryl-Ann, 9, has cerebral palsy and microcephaly. She is severely disabled, and requires 24-hour care. Almost four years ago, Rob and Janine made the drastic decision to stunt Daryl-Ann’s growth, using prescribed high doses of hormones to speed up puberty and closing the growth plates at the end of long bones, like legs and arms, sooner. Rushing Daryl-Ann through an early puberty means she will never grow to her full adult height. Here, Janine writes about making that decision.
Deciding on Growth Attenuation Treatment for Daryl-Ann was easy. Probably one of the easiest decisions we’ve had to make for her.
We were already having to put her into various forms of equipment, not only to help her access her world, but also to keep her body as straight as possible to maintain her ranges.
Without normal movement, she would never get back any range of movement once it was lost through contractures – permanent shortening of a muscle or joint due to being too tight for too long.
This would lead to her being contorted… just like all the ‘grown-ups’ with severe cerebral palsy. We knew from people with cerebral palsy who could talk just how painful all the therapy can be – the physio, the surgery, the discomfort from simply sitting or standing.
Perhaps our view was simplistic, but we’ve still learned nothing to change it. Why should Daryl-Ann suffer to grow larger?
Her injury, her disability, was due to misadventure at birth. This whole situation was just not fair from the day she arrived in this world, grey and lifeless.