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.
We had looked after her so carefully for nine months, and her future had been irrevocably altered in half a day. Now we’d have to look after her even more carefully.
We were told she wouldn’t see her first birthday, she’d die of a simple infection and we should take her home and "enjoy her while we had her".
Well, Daryl-Ann needs to live too. Look how far she’s come. Look how hard she has battled! She has proven everyone wrong – for now.
But just like the victim of a massive stroke, inertia soon takes its toll. How could we prevent her suffering more? How could we ensure the best quality of life for her?
The simple answer was to make sure she could keep getting in the thick of it. That meant sitting on our laps and eating, that meant getting taken everywhere, that meant going to daycare and school, that meant experiencing everything the best way she could.
That meant allowing her to stay small. Staying small would lessen the difference between the length of her bones and the length of her muscles, meaning she wouldn’t be as curled up.
It would mean she could still sit on our laps and eat, drink and have cuddles; we hated putting her in her chair and she hated it just as much.
It meant we could still lay her on the floor where she was able to have the most voluntary movement and enjoy her toys, laugh and kick away. It meant we could hold her on a swing, a trampoline, carry her into awkward places, upstairs where there are no lifts – she could get to do everything her peers were doing, from the comfort of our arms.
Like many kids with severe brain injuries, her body had started the process on its own anyway. Precocious puberty started at four years old. Should we let nature take its course? What was natural about how she was now anyway?
The injury, the resulting surgery to correct shortened muscles, the casts, the equipment, the medication for her seizures and reflux – none of it was natural. None of this was how she was going to be.
All of these things had side effects, all of these things had risks. GAT had minuscule risks compared to many of these things, to this child who could still be taken out in the blink of an eye if she rolled onto her back and coughed … but the potential benefits were huge.
It was a no-brainer. We would decide the same again. In a heartbeat. Because it is right for Daryl-Ann.
We know because of the way she lights up when she’s right in the thick of it where she wants to be, not up in her wheelchair, separated from the world that should be hers by metal, plastic, Velcro and clips.
It’s very rare you get to choose a positive outcome for these kids – it’s either this pain now or that pain till they die, this medication with side effect abc or that with side effect xyz.
Grow big and have pain and be separated more and more from human contact and comfort … or stay a bit smaller and enjoy fully the only things you can.
Surely you can’t love someone and deny them their best chance at living life at the same time?
See more of Janine and Daryl-Ann’s story on Dateline, Tuesday 21 June at 9.30pm on SBS.