Premature babies normally catch up by the age of 2 in
growth and development, but Toby never did. Photo /
They were born 60 seconds apart, but 3-year-old Finn Dale
towers over his twin brother Toby.
Despite being identical twins, the boys couldn't be more
different physically with Finn weighing 6kg more and wearing
clothes four times larger.
Toby has a rare growth disorder called Russell-Silver
Syndrome which affected how fast he grew in the womb and his
growth afterwards. He has never been able to catch up to
Finn, who is above average for his age in weight and height.
The twins' mother, Jacquie Dale, says having identical twins
highlighted how behind Toby was developmentally.
"It's been harder, but now for me it's clearer too because
they are identical twins so the gap is getting bigger and
The boys, who live in Hamilton, were born 11 weeks premature
- Toby weighed a tiny 480g and Finn 1.35kg. Both were in
Starship hospital's Newborn Intensive Care Unit (NICU) but
while Finn went home on his due date, Toby stayed another six
months until he could eventually be taken home, with oxygen
and feeding tubes attached.
Mrs Dale and her husband Tim call Toby their little miracle
because he spent his first year fighting for survival and was
in hospital more than 250 days for the first three years of
Premature babies normally catch up by the age of 2 in growth
and development, but Toby never did.
His failure to gain enough weight, poor appetite, bad reflux
and triangular face are all characteristics of Russell-Silver
Syndrome, which he was diagnosed with a year ago.
The biggest challenge for Mrs Dale, a trained nutritionist,
is getting enough nutrients into him as Toby cannot keep food
down and has to be fed high-calorie formula through a port in
his stomach overnight and three times a day for an hour. He
carries a hospital pump around in a backpack and the feed is
slowly taken in while he's playing.
Mrs Dale has struggled to find out information about
Russell-Silver Syndrome and wants to take Toby to a
conference in Chicago in July, run by the Magic (Major
Aspects of Growth In Children) Foundation.
They have an appointment with two world experts in the field
and want to find out more about growth hormone drugs commonly
used for children with growth disorders in the US and whether
Toby would benefit from them. The drugs are not subsidised
for New Zealand children with Russell-Silver Syndrome and
would cost tens of thousands of dollars a year. Toby would
need to start taking them before he turned 4.
"It's been really limiting here," Mrs Dale said. "Because
most of the other babies that are tube fed here are tube fed
for different reasons in New Zealand. They might have
cerebral palsy and they might have specific reasons they
can't eat, they still grow and get enough calories. With Toby
it's a battle getting him to grow."
The Dales are raising money through Givealittle.co.nz to
attend the Magic conference.
*Genetic condition characterised by severe intrauterine and
post-natal growth restriction.
*The rare syndrome was first described in 1953.
*Ranges from 1 in 75,000 births to 1 in 100,000.
- Nikki Preston of the NZ Herald