Why did a mum ask doctors to stop her daughter growing?

Nine-year-old Daryl-Ann is severely disabled, but by deciding to stop her growth, Janine Bolton tells Dateline that her family can now continue to care for her themselves.

Janine Bolton says Daryl-Ann loves being on the trampoline with her, but she's concerned that wouldn't be possible if she grew any bigger. Source: SBS Dateline

Deciding on Growth Attenuation Therapy for Daryl-Ann was easy. Probably one of the easiest decisions we’ve had to make for her.  

By the time we had heard about the treatment, we were already well aware of how her inability to move normally would cause her body to grow abnormally.  

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 be suffering to grow larger?

Janine and her partner Rob at the swimming pool with Daryl-Ann and their two younger children Georgia and Drayven. Source: SBS Dateline

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 you 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. We decided staying small would lessen the difference between the length of her bones and the length of her muscles meaning she wouldn’t end up 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 we know she hated it just as much.

Dateline's Amos Roberts films Daryl-Ann being looked after at home in New Zealand. Source: SBS Dateline

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, up stairs 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 already, 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.

Janine says Daryl-Ann can be weightless and relax in the pool away from her equipment, and that would be much more difficult if she grew larger. Source: SBS Dateline

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?

Janine's family is one of those featured in Dateline's story, Growing Pains: